The Spirit of Waubun

Accompanied by Copper, Walking Alongside You All the Way

Dear Amy,

Wilson's disease is a rare autosomal recessive genetic disorder of copper metabolism caused by mutations in the ATP7B gene, with a high incidence among adolescents. Excess copper ions continuously deposit in the body's major organs, causing ongoing and irreversible damage to multiple organs. Fortunately, it is also one of the few hereditary diseases that can be effectively treated. If diagnosis and standardized treatment are delayed, it can easily lead to disability or even death; but with early screening, early intervention, and long-term standardized management, the vast majority of patients can avoid severe damage and enjoy a quality of life and a lifespan almost indistinguishable from those of ordinary people.

The Wuhan Wuchang District Tongxin Wilson's Disease Patient Information Service Center was established on December 29, 2016. Jointly founded by Wilson's disease patients, family members, medical workers, and volunteers from across the country, it is currently the only non-profit charitable organization in China that is registered with the civil affairs authorities and serves the Wilson's disease community. The center builds a bridge for patients to exchange information and share experiences, continuously promotes the realization of patients' equal rights in areas such as medical care, education, employment, marriage, and daily life, and strives to build a support system that integrates social attention, policy protection, and charitable assistance.

Here, I sincerely call on all of society to see this rare-disease community of Wilson's disease: to help bring new drugs and cutting-edge diagnostic and treatment technologies to fruition, to continuously improve medical insurance reimbursement policies, to guide more charitable relief resources toward rare diseases, and to work together to hold up a fair and warm sky for every Wilson's disease patient.

I am Yan Qing, a Wilson's disease patient who has lived with the illness for thirty years, and also the head of the Wuhan Tongxin Wilson's Disease Information Service Center. Having devoted myself to the charitable cause for Wilson's disease as a rare disease for nearly twenty years, I have led my team to win the Outstanding Organization Award and the Best Partner Award from the Rare Disease Organization Development Network, and to earn honors many times in charity venture projects at various levels; I myself was once named an Outstanding Volunteer of Hubei Province.

Here, I want to say to Amy: a rare disease is never a synonym for misfortune. It is an objectively existing part of the process of human life's evolution, inscribed with the code of life's evolution, and it also measures the steady steps of modern medicine's continual breakthroughs. Every exploration and verification of a disease paves a path of survival for the patients who come after. We have never been the weak who passively wait to be rescued; rather, we are fellow travelers on the road, using our own experiences as bridges and our long perseverance as lamplight.

I also want to say to all patients and family members around the world who are like us: please never give up hope. Every time you grit your teeth and persevere, you are rewriting your own destiny; every time you bravely speak out, you gather into flickers of light that push forward the improvement of policy and the progress of medicine. Wilson's disease is never a rest note in the score of life, but a bugle call summoning understanding, calling for action, and driving social change. The true height of a society's civilization has never been measured by how it treats healthy people, but by how it lifts up those who, tormented by illness, still hold hope in their hearts and gaze up at the stars.

I hope the public will see us, and not regard us merely as cold medical cases. We are vivid ordinary people with stories, with dignity, and with equal rights. I hope society will support us, and that this support will not be condescending charity or pity, but companionship shoulder to shoulder as equals, and empathy from the heart. With a sound medical system as a shield, innovative medical technology as a blade, and mutual respect as a cornerstone, may we guard every life that is eroded by the element copper yet still strives to shine. May all Wilson's disease patients bask freely in the sunshine and live in peace; your very tenacity in surviving is the highest praise for the resilience of life.

We have never longed for special favors; we only yearn for an equal, level gaze. Please do not label us as freaks or useless simply because of our illness. Countless patients in our community persist in completing their studies, work at normal jobs, continue to create social value, and likewise long for ordinary love and the warmth of everyday life. We hope more people will come to know Wilson's disease, so that newly diagnosed patients take fewer detours through misdiagnosis and missed diagnosis, and can seize the best treatment window at the early stage of onset; we look forward to more affordable drug prices and more comprehensive medical insurance coverage, so that no ordinary family will empty its savings to pay for treatment and fall into the desperate plight of having no drug to cure and no money to treat.

What we want has never been pity, but respect; not one-sided assistance, but walking side by side. Accept us into normal society, and give us the same chance as everyone else to chase dreams and embrace happiness.

Even though my body has long been bound by illness, my steps forward will never stop. Like every ordinary person, I too deserve flowers and sunshine, and to live as the ideal version of myself in my heart.

Yan Qing

Head, Wuhan Tongxin Wilson's Disease Information Service Center

June 2026

Dear Amy,

Hello! I am Yin Li, the founder of “Bruton's Home of Friends,” a mutual-aid community for patients with inborn errors of immunity (IEI), formerly known as primary immunodeficiency (PID). I am also a 31-year-old patient with X-linked agammaglobulinemia (XLA).

When I learned that you are going to take on the challenge of the “world's toughest rowing race”—crossing the Atlantic—and that you will carry the voice of the rare-disease community as you cut through the waves, my heart could not calm down for a long time. Your husband, a 75-year-old patient with cystic fibrosis (CF), is a miracle of life. And I, an immunodeficiency patient who has lain in the hospital for nearly 3,000 days and nights and undergone 18 orthopedic surgeries, write this letter also wishing to place into your hands the deepest cry and unwillingness of our community.

Amy, out on the vast Atlantic, when the waves churn and night falls, I would like to ask you to help us read this passage aloud to the world. Because our community is going through the most cruel and most “heartbreaking” regret among rare diseases.

1. Our heartbreak: there is a treatment, yet half a lifetime was destroyed

Many people think all rare diseases are incurable, fatal illnesses, but inborn errors of immunity (IEI) are not. They are among the few, extremely fortunate rare diseases that can be treated with medicine!

For example, in XLA, which is what I have, all we lack is immunoglobulin (antibodies). As long as we can be diagnosed early, before the body's organs suffer irreversible damage, and receive a regular, standardized infusion of immunoglobulin (IVIG), our immunity can be just like that of a normal person. We can experience the world like ordinary people—go to school, work, fall in love—and have an ordinary life no different from anyone else's.

The medicine is right there, within reach. Yet our tragedy and regret lie precisely here.

Because the disease is extremely rare and only presents symptoms resembling those of common illnesses, the diagnosis rate of IEI is extremely low. This means that countless children cannot even wait for a diagnosis before leaving this world in agony amid endless misdiagnoses and severe infections.

And what about the few who survive? Take me—I ran headlong into walls for 22 years inside the maze of “recurrent infections.” Because I was always sick, from childhood I was misunderstood by elders and those around me as “lazy, unwilling to exercise, even faking illness to skip school.” It was not until I was 22, when my left knee suddenly developed a severe joint infection, that a genetic test finally confirmed the diagnosis. On the day of the diagnosis, the doctor said to me: “Yin Li, all the pain and all the misdiagnoses of the first 22 years of your life could actually have been completely avoided with just one regular infusion each month.”

Amy, can you imagine that feeling? It was not the relief of a narrow escape from death; it was heart-piercing regret and unwillingness! If I could have been diagnosed a little earlier, even just a few years earlier, my joints would not have become disabled, I would not have had to go through the nightmare of these 10 years—18 times of having my flesh cut open, my bones sawed, prosthetics implanted, then reinfected, then cut open again—and I would not have had to walk through my youth on crutches. I could have lived a decent and wonderful life, just like an ordinary person!

If my experience has been a long torment, then another, even more severe type within our community—SCID (severe combined immunodeficiency)—is, for many families, a sudden and unforeseen life-and-death parting. These children look completely healthy when they are born, but because they have no immunity at all, they often face severe infections not long after birth and leave this world in haste.

What is even more heartbreaking is that every healthy newborn receives the BCG vaccine, which was meant to be a barrier protecting the newborn. But for SCID babies with no immunity at all, this live vaccine becomes a catastrophe, becoming the “death accelerator” of their lives. Because no one knew the child had an immunodeficiency, an act that should have been one of love and protection turned, in ignorance, into the most cruel harm.

Every time I see such a tragedy, my heart cannot rest. Because this could have been completely avoided with just one simple newborn screening test at birth! If it could be detected early through screening, if the live vaccine were not given, and if a bone marrow stem cell transplant were performed as early as possible, these children could be completely cured and have a fully sound life.

This price is far too heavy. And such regret is happening, truly, every day, in tens of thousands of immunodeficiency families.

2. Our counterattack and hope: helping the children who come after reclaim a happy childhood

When I was diagnosed at 22, the doctor said that my surviving was already a “miracle.” Since I am a miracle, I did not want to just waste away in a hospital bed. So that the children who come after would not have to go through the same “heartbreak” as I did, I founded “Bruton's Home of Friends.”

In the past year, our team of volunteers has traveled to nearly 30 cities and visited over a hundred experts; we have sorted out medical pathways for hundreds of bewildered families, assisted suspected patients in completing key examinations, and literally helped them reclaim the time that misdiagnosis had stolen.

What comforts me and makes me happiest is that change is happening, and hope is taking root!

In the past, a diagnosis could take ten or twenty years; now, thanks to early screening and the attention of grassroots doctors, some children receive a diagnosis when they are just a few months old, before any severe infection has occurred! More and more children, because of everyone's efforts, are diagnosed early and receive standardized treatment. Watching them, I see that they no longer have to repeat the dark childhood of shots and medicine that I went through; they can go to amusement parks, run freely in the sunshine, and have a laughing, joyful childhood just like the most ordinary healthy children!

Every time I see these children share photos of their normal lives in our group chat, I feel that all the suffering I endured over these 22 years, and all the scars on my body, were completely worth it. On my behalf, they are living out the ordinary, regret-free life that should have belonged to me!

3. Carrying our hope, please row forward!

Amy, the loneliness, fear, and towering waves you face on the Atlantic are what we endure every day in the waves of fate. The pair of oars in your hands measures not only the width of the ocean, but also the tenacity of the lives of our rare-disease community.

When you feel utterly exhausted in the middle of the Atlantic, please listen to the sound of the sea wind—it may sound exactly like the cry of all the living and departed lives of our community gathered together.

Please help us tell the world: inborn errors of immunity can be treated! Please help us call out: let the sunlight of early diagnosis and early treatment shine into every corner, so that every child with a rare disease can take fewer detours and have the most ordinary, and most brilliant, life!

You are by no means rowing alone. The hope of tens of thousands of rare-disease families is turning into the oars in your hands. We are here, waiting for your safe and triumphant return, waiting for you to join us in turning the abyss of rare disease into a land full of sunshine!

Wishing you fair winds and safe passage!

Yin Li, Founder of Bruton's Home of Friends

Dragon Boat Festival, 2026

Hello, Amy! And hello to all the friends listening to this letter!

I am Zhao Na, from Jinzhou, Liaoning Province, China. My daughter, Miaomiao, is 10 years old this year. On the night of July 10, 2022, she suddenly lost her sight, and then came headaches, a high fever of 40°C, vomiting, and coma—she was admitted to the ICU! A month later she was diagnosed with mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes, with the mutation site A3243>G, known as MELAS syndrome for short! When I heard the diagnosis, I was stunned; my mind went completely blank. I did not know what kind of disease this was, nor how to treat it going forward, and even less did I know that this was a rare disease that could strike at any moment and even be life-threatening!

The attending doctor told us that there is currently no curative medicine for this disease; all that can be done is symptomatic treatment when an episode occurs. In the days that followed, the whole family was in a state of “battle readiness” every day, and I in particular spent each day on edge, because her disease is like a time bomb—she is fine one second, and has an episode the next… always catching us off guard! The child takes large pills three times a day, seven or eight kinds of medicine at each meal. At first she couldn't swallow pills; even drinking a whole cup of water with one pill didn't guarantee it went down—let alone eating a meal, she was full just from taking medicine and drinking water. The child cried while taking her medicine, and I cried too. That feeling of helplessness and pain is truly hard to describe!

She should have been walking into a classroom to study, and should have had a happy childhood playing together with friends, but my darling can only stay at home—not daring to run or jump, unable to play any entertainment with the slightest thrill (such as trampolines, swings, water surfing, and so on). At many children's play areas, we can only stand at the entrance, gazing in with trepidation…

If she can't go to school, we just don't go; if she can't play certain activities, we simply don't play them—none of that matters much. The main thing is that this mitochondrial disease triggered epilepsy. To reduce the seizures, the child has to follow a ketogenic diet, and there are so many foods she cannot eat! Ordinary rice, noodles, ice cream, French fries, drinks, cake, cookies, and so on—she cannot eat any of them. The child often asks me: “Mom, can I eat this? Mom, can I eat it after I get better?” Each time she asks, my heart aches as if pricked by a needle… So many nights have been sleepless nights for me, my heart constantly full of self-blame. Why does fate toy with me like this? Heaven finally granted me an angel after so long (I gave birth to my darling at the age of 40)—why must it break her wings? What must I do to bring back my darling's health…

Having said all this, many people will ask: “What is mitochondrial disease?” What symptoms does someone with this disease have? The answer: the mitochondria are the “energy factories” of the human body's cells. Once mitochondrial function becomes defective, all the organs throughout the body gradually fail from a lack of energy—this is mitochondrial disease, a hereditary rare disease with an extremely high rate of disability and death. And the mitochondrial encephalomyopathy that my daughter has, MELAS syndrome, is the most difficult and complex of all mitochondrial diseases in terms of treatment and drug development. Typical manifestations include sudden stroke-like symptoms (limb weakness, loss of vision), epileptic seizures, migraines, vomiting, and impaired consciousness; it can be said to affect every organ in the body, and can trigger an episode—or claim a life—at any moment!

We are all a group of ordinary parents, yet around us there truly is such a group of forgotten lives. They are enduring the endless torment brought by mitochondrial disease, yet because the disease is rare and complex, they are trapped in the triple plight of difficult diagnosis, difficult access to medicine, and difficult access to support, struggling bitterly in the dark. They are the most fragile part of the rare-disease community; every life is racing against death, and every family is barely holding on at the brink of poverty caused by illness. At this moment, we urgently call on the state to give this niche group more attention and assistance, so that they no longer face illness and despair alone.

For families of mitochondrial disease patients, beyond the illness itself, what is even harder is the dual pressure of survival and treatment.

On one hand, specific drugs are in extreme shortage and are very expensive. At present, there is no targeted specific drug for mitochondrial disease; most treatment drugs are imported or out-of-pocket, not covered by medical insurance. Patients need thousands or even tens of thousands of yuan per month just for medicine, and together with the costs of long-term rehabilitation, hospitalization, and examinations, the annual expenses easily reach hundreds of thousands. For ordinary wage-earning families and rural families, this is an astronomical figure. Countless families are thus bankrupted and buried in debt, falling into the despairing plight of “if you can't afford treatment, you can only give up.”

On the other hand, medical insurance and social relief coverage are insufficient. Although our country has already included some rare diseases in the protection system, the diagnosis, treatment, and medications related to mitochondrial disease are still not comprehensively covered, and critical-illness insurance and medical assistance play only a limited role in backstopping such high costs. At the same time, there are very few dedicated relief funds or charitable resources for mitochondrial disease. Patients' families lack effective relief channels and can only bear all the pressure alone.

Every life deserves to be treated kindly, and every patient has the right to live. Mitochondrial disease patients are not “a niche burden,” but compatriots who need to be protected jointly by the state and society. Here, we make an earnest appeal to the relevant state departments:

Speed up inclusion in medical insurance to ease the burden of seeking care: as soon as possible, include standardized diagnosis and treatment for mitochondrial disease and specific treatment drugs in the national medical insurance catalog and the scope of critical-illness insurance reimbursement, and raise the reimbursement ratio; include mitochondrial disease in the certification of chronic and special diseases, incorporate it into the scope of medical assistance for major and severe illnesses, provide special relief for families in difficulty, and build a solid line of defense against poverty and its recurrence caused by illness.

Improve the diagnosis and treatment system to enhance treatment capacity: establish a national, provincial, and municipal three-tier collaborative network for mitochondrial disease diagnosis and treatment, set up dedicated diagnosis and treatment centers and designated hospitals, open green channels for rare-disease diagnosis and treatment, and achieve early detection, early diagnosis, and early treatment; strengthen professional training for grassroots medical staff, popularize knowledge of mitochondrial disease diagnosis and treatment, and reduce rates of misdiagnosis and missed diagnosis; establish a national registry system for mitochondrial disease patients, ascertain the number of patients, and provide data support for policymaking.

Increase research investment to break through treatment bottlenecks: set up a dedicated research fund for mitochondrial disease, support research in basic medicine, clinical treatment, gene technology, and other fields, accelerate the development of domestic specific drugs and the clinical translation of cutting-edge treatment technologies, promote policy approval of safe technologies such as mitochondrial replacement therapy, and solve at the root the problem of having no drug to cure and treatments that don't work.

Improve the support mechanism to provide all-round care: introduce dedicated assistance policies for mitochondrial disease patients, providing rehabilitation care, living subsidies, and educational and employment support, especially for minor patients, granting long-term care protection; encourage charitable organizations and social forces to participate in relief, and build a multi-tiered support system that combines medical insurance, assistance, charity, and social support, so that patients feel the warmth of the state.

They are children cradled in their parents' hands yet unable to grow up healthy; they are young people who should be enjoying life yet are trapped by illness; they are the pillars who hold up their families yet have been struck down by disease. They have never given up hope of living, yet for lack of national attention and protection, they struggle bitterly in a desperate situation.

A rare disease does not mean being ignored; a niche group needs the state's backstop all the more. We earnestly ask the relevant state departments to attend to the survival plight of the mitochondrial disease community, to place this niche appeal on the agenda of livelihood protection, and to use the sunshine of policy to illuminate these lives trapped by rare disease, so that every mitochondrial disease patient can receive standardized treatment, every family can escape despair, and everyone can have the hope and dignity to live!

Let us speak out together, let love be not rare, and let every life be treated gently!

Finally, my heartfelt thanks to Amy for reading this letter out on the Atlantic, and my deep admiration for the spirit of braving the wind and waves shown by Amy and her team. I wish Amy success in the “human-powered rowing crossing of the Atlantic” challenge, and a safe return!

Kōde Mitochondrial Family Alliance; Miaomiao's mom, a mitochondrial patient

June 21, 2026

A Letter to Amy

Hello, Amy. I am Wang Zhipeng, from Inner Mongolia, China. The disease I have is SMA type II (spinal muscular atrophy).

Overview: SMA is a rare autosomal recessive genetic disease. Due to a defect in the SMN1 gene on chromosome 5, the motor neurons of the spinal cord are damaged, causing weakness and atrophy of muscles throughout the body.

Types: Type 1 is the most severe, with onset in infancy and difficulty breathing and feeding independently; Type 2 has onset in early childhood, and patients can sit but cannot walk; Type 3 has onset in childhood/adolescence, patients can walk but gradually weaken in adulthood; Type 4 is a mild adult-onset form.

Characteristics: intelligence and the senses are normal; only motor function declines. Parents are mostly asymptomatic carriers, so there is a genetic risk in childbearing.

Current status: SMA now has targeted drugs that can slow progression and improve symptoms; combined with rehabilitation, respiratory care, and nutritional care, they can greatly improve quality of survival.

I am currently doing rehabilitation in Qingdao. I am 11 years old, and my hobbies are singing and photography. The medicines I have used include nusinersen sodium, risdiplam oral solution, and GC101. We are the spinal muscular atrophy (SMA) rare-disease community. Because of gene defects, our motor nerves are damaged and our muscles atrophy and weaken, but our intelligence is unaffected. There are patients of all ages; we need medication for life, and rely on rehabilitation aids to maintain mobility.

Main challenges: long-term high costs and care expenses, a lack of public accessibility facilities, being prone to misdiagnosis, and many obstacles in seeking and finding employment. We are mentally sound and have the ability to learn and work; our mobility difficulties come from a neuromuscular disease, not from low intelligence. Standardized treatment can significantly improve our quality of life. We look forward to social inclusion, better accessibility infrastructure, and improved medical protection.

Amy, I think you are truly amazing. When I heard that you were going to cross 5,000 kilometers, and to do it by rowing by hand, I was astonished—covering such a great distance without any power or assistance. Keep going! I believe you will surely succeed in the challenge. And to friends with the same illness in other countries, please don't give up either. One day we will all be able to walk and run; even if our bodies are limited, we can still see the world just the same. We are not just rare—we must pull ourselves together. I believe that one day, all rare diseases will be treatable.

What I want to say to society on behalf of the SMA rare-disease community:

We are patients with spinal muscular atrophy. Although our bodies are trapped by weak muscles, our minds and hearts are just as vivid and complete as everyone else's. We do not need pity; we only ask for equal understanding. Our mobility difficulties are not laziness, still less impaired intelligence—they are only the inconvenience brought by a neuromuscular disease.

We work hard at rehabilitation and persist in taking our medication, just to have a little more ability to live independently. We hope cities will improve accessibility ramps, elevators, and restrooms so that we too can move about freely. We hope schools and workplaces will show a little more inclusion, giving us a fair chance to learn and realize ourselves. We hope more people will understand rare diseases and reduce misunderstanding and strange looks. Expensive drugs sustain our lives, and we also look forward to continued improvement in medical protection to ease the burden on countless families.

I also believe that one day I too will be able to stand up, walk, and run. Keep going.

Wang Zhipeng, SMA type II (spinal muscular atrophy) patient

June 2026

The Waves and the World Will Hear Our Voice — To Amy Xu, Who Is Taking On the Atlantic

Dear Amy,

Hello!

When you are out on the vast sea, your two hands rowing the oars in “conversation” with the waves, please know this: on this end of the earth, there is a group of people who are with you.

My name is Xiaolan; you can also call me Nicole. I am a patient with short bowel syndrome (SBS), and also an expert patient at China's “Changkanghui SBS Patient Care Center.”

What I want you to know about SBS

Short bowel syndrome is a syndrome that arises when extensive resection or bypass of the small intestine, caused by various reasons, significantly reduces the effective absorptive area of the intestine, and the remaining functional bowel cannot meet the patient's nutritional needs. It is characterized mainly by diarrhea, acid-base and water-electrolyte disturbances, and disorders in the absorption and metabolism of various nutrients. Patients may need to depend on parenteral nutrition (intravenous infusion) or enteral nutrition (special nutritional solutions) for the long term, or even for life, to sustain their lives.

At present, our country still lacks unified national SBS registry data. Judging by the number of people in Changkanghui's three patient groups, there are more than 1,000 people in total, of whom child patients account for about 60% and adult patients about 40%. The core challenges this community faces are not only physical—specialist medical resources are highly concentrated in first-tier cities, there is insufficient guidance for families caring for sick children, and the cost of treatment is heavy—but also psychological and social: the helplessness in the early period after diagnosis, the loneliness of long-term home treatment and care, and the dignity dilemmas when out in public.

What we are doing — moving from “mutual aid” to “empowerment”

Changkanghui is the first, and currently the only, mutual-aid charity group in China whose core members are short bowel syndrome patients and their families. Upholding the mission of “joining forces to watch over one another; the bowel may be short but our bond is long,” we take the “starfish spirit” as our core—like starfish, possessing strong adaptability and regenerative power, and the ability to glow in the dark and light the way for one another.

In terms of patient services

In September 2025 we released China's first “‘Long and Lasting’ Short Bowel Syndrome Patient Popular-Science Handbook”—126 frequently asked questions and 200 pages of solid content, hailed as “a treasury for patients' home recovery.” More than 300 copies have been distributed free of charge, covering 29 provinces, autonomous regions, and municipalities across the country. Also, since the end of last year, we have been pushing out a “short-bowel knowledge card” every day to cultivate patients' self-management ability, with a daily open rate of over 70%. In addition, to improve domestic SBS patient data, we are also carrying out ongoing patient registration.

In terms of doctor-patient communication

In 2025 we held 17 online doctor-patient exchange meetings and 2 offline empowerment sessions for expert patients, covering over a thousand participants, with an average online viewing time of over 60 minutes per session. We broke down information barriers and let experts' solid knowledge reach patients directly.

In terms of policy advocacy

Over the course of the year, Changkanghui's official service account published 12 interpretations related to “Huiminbao” (city-customized commercial insurance) and medical insurance policies, and successfully pushed Shenzhen, Beijing, and other provinces and cities to include teduglutide (an innovative drug for SBS) in the scope of Huiminbao reimbursement. With real action, we have proven that patient organizations can become drivers of policy change.

In addition, we also pay attention to the dignity of patients when they travel—in a charity venture project jointly launched by the Kōde Rare Disease Center and Alibaba Health, the Changkanghui community's “no awkwardness” travel-kit trial project received support and was carried out smoothly. We hope that every patient friend can walk in the sunshine with peace of mind, no longer held back by the question of “how to handle a ‘special situation’ in public places.”

To you, who are rowing right now

Amy, you rowing without pause on the sea, and we who infuse parenteral/enteral nutrition every day, are actually doing the same thing—

Going forward with all our might.

What you face is 5,000 kilometers of raging waves; what we face is a physical condition that could strike suddenly on any given day. You row for 2 hours and rest for 2 hours; we too cycle between “being able to eat normally” and “having another bowel obstruction.” The space on your boat is less than four square meters; our “world,” too, was once only the distance between the hospital ward and home.

But do you know what?

Rare-disease patients are another group of people in this world who are “crossing the Atlantic”!

We have no one to navigate for us, no supply ship, no finish line. What we have is only the courage, each day we wake up, to choose to keep rowing.

You are crossing the Atlantic carrying the voice of the rare-disease community, and I want to tell you:

This voice, we have been brewing for a long time.

Every popular-science post, every online/offline meeting, and every policy interpretation by Changkanghui has been speaking up for this community.

To patient friends around the world

Dear patient friends,

I know that being ill sometimes makes one feel “exiled” to a lonely island. But Amy, with her actions, tells us—

Between one lonely island and another, a bridge can be built.

Do not be ashamed to let your voice be heard. Your story, your plight, your needs—all deserve to be taken seriously by the world. Every letter Amy reads out on the sea is light that we send out together.

“Short-bowel people don't give up”—this is something we often say. Not giving up is not because we are unafraid, but because, though afraid, we still choose to row.

To society

I hope that one day the three words “rare disease” will no longer make people feel unfamiliar or fearful. I hope that every life, no matter what illness it carries, can walk in the sunshine with dignity. I hope medical insurance policies will cover one more drug, I hope public places will have one more “accessible” restroom suitable for short-bowel patients, and I hope every strange look can turn into an understanding nod.

To myself

I often think of a saying:

“Love never fails.”

It is not far away; it is right in every moment when patient friends answer one another's questions, every early morning when policy advances, and every moment we choose not to give up.

This saying also reminds me: doing these things, not every one will necessarily show a result, but the heart that acts out of love will not be wasted, and will never truly fail.

This is the way I want to keep living out.

Amy, the days at sea must be very hard. But please remember: when you row, you are rowing not only the boat, but also the hearts of countless rare-disease patients.

Every stroke of yours is an act of “being seen.”

The wind and waves will pass, but the voice in this letter will keep echoing over the surface of the sea.

Wishing you safety, and wishing you a finished race!

Xiaolan

Short bowel syndrome patient; expert patient at Changkanghui SBS Patient Care Center

June 21, 2026

Dear Amy,

My child is a very lovely baby, until a routine check-up unexpectedly found that she has glycogen storage disease type IA, a rare congenital metabolic genetic disease. Because her body lacks the enzyme that metabolizes glycogen, the liver cannot release blood sugar on its own, and dangerous hypoglycemia can occur at any time; over the long term it can trigger multiple complications such as an enlarged liver, high uric acid, high blood lipids, slow development, and osteoporosis. At present there is no curative drug for this disease. The child must strictly control her diet for life, eat frequent snacks during the day, and must take raw cornstarch at set times during the night to stabilize her blood sugar; the slightest lapse in daily diet or routine can endanger her life.

I am a kindergarten teacher, and also the mother of a child with glycogen storage disease. On one hand I have to look after dozens of healthy children in my class, and on the other I have to keep my nerves taut at all times caring for my sick baby, often weeping silently in the dead of night. Every day I monitor blood sugar at set times, prepare special meals, and get up at set times during the night to feed cornstarch. Life is hard, but I have always been willing to stand up and speak out for families with the same disease, so that more people can see this niche rare-disease community.

We families with glycogen storage disease face many hardships that are unknown to others: awareness among the elderly is extremely low, many grassroots doctors do not understand the condition, and children are easily misdiagnosed and their treatment delayed when the disease strikes; special diets, long-term examinations, and regular medication bring continuous financial pressure; children cannot eat ordinary snacks normally, dine out, or board at school, and are restricted everywhere in going to school or traveling; many parents suffer long-term anxiety and insomnia, bearing enormous psychological burdens. We hope everyone knows that a rare disease is not a “minor illness”—the sick child simply needs long-term, meticulous care, and with standardized management, the child can grow up steadily too.

Amy, facing difficulty head-on is itself an incredibly brave thing. We are all in a contest with unpredictable illness; this road is strewn with fine-grained suffering, but if we persevere we will see the light. May you have the confidence to overcome every difficulty and not fear a rugged road ahead. Every time you rise to a challenge is worthy of applause. I wish you all the best, and that everything comes with a sweet aftertaste.

To all patient friends and to all parents walking alongside us: we do not have to shoulder all the exhaustion alone. Illness brings much helplessness, but we have never been fighting alone. Take good care of yourselves; you don't have to force yourselves to be strong, and it's okay to be fragile now and then. Believe that medicine is always advancing; hold on to every bit of daily caution, and the days will slowly get better. We accompany one another and warm one another; the future will surely hold more hope.

I hope society can leave a little more inclusion and understanding for the rare-disease community. Please do not look at special children with strange eyes; give us more convenience in seeking medical care, going to school, and traveling. I hope rare-disease popular science can be spread, that related medical protection can be improved, and that the financial burden on families can be eased. We are just a group of ordinary people who protect our children with all our might; a little understanding and kindness can hold up the hope of our entire family.

Though there are ten thousand hardships, I will still be gentle and firm, walking slowly alongside my child and guarding every day and every night. Together we look forward to the day when the medicine appears to cure our children!

I have a dream (To glycogen storage disease patients)

I

My body hides a storehouse that cannot be opened,

glycogen piling up, the liver bearing its weight, the bones slow to grow;

in the dead of night I am always scorched by the chill of low blood sugar,

a bowl of cornstarch grinding away countless ordinary dreams of sleep.

Others have their three meals at ease; I keep to a strict diet,

not daring to covet a single bite of sweetness, not daring to let my stomach go empty for half a while.

Illness knocks at the door again and again; the hospital is a place I often go;

the uncomprehending gaze of others falls upon my swollen belly.

A short and small body, bearing a wound I was born with.

II

I have a dream

that the world will no longer be indifferent to the loneliness of rare disease,

that medicine will break through the barriers and find the miracle of a cure,

that the enzyme will awaken anew, and glycogen will break down without hindrance;

that every pair of footsteps trapped by illness

can tread across mountains and rivers, and rush toward the distant four seasons;

no shackle of lifelong dietary restriction, no anxiety of repeated hospitalization,

that every fragile life may be gently treated and known.

No longer must one fight alone through the long grind of the years.

III

Even though the long night before us is cold and illness is as ever,

the dream deep in my heart has never withered inch by inch.

May research break like dawn and dispel the barrier of metabolism;

may all patients who press forward under a heavy load

at last break free from the bonds of illness and grow freely.

I have a dream

of the day the blood flows freely,

with ordinary meals, peaceful sleep, and health year after year.

Glycogen Storage Disease Care Center

June 2026

Dear Amy,

Hello!

When you read this letter, perhaps you have just awakened to some Atlantic morning, the sea splashed by the rising sun into a spread of shattered gold, glittering with the waves; or perhaps you are facing the Atlantic's sky-high billows, tenaciously facing them alone in your lone boat amid the crests and troughs, with only the sound of the wind for company across the vast sky and sea. And on the other side of the earth, many people are quietly watching the direction in which you press forward. As a member of the rare-disease community, I wish you safe passage across a thousand waves, to send out a far-reaching and firm voice to the world on our behalf…

At this moment, I want to write this letter to you on behalf of the community of patients and family members with amyotrophic lateral sclerosis (ALS).

ALS is a rare neurodegenerative disease. Because the nerve cells that control muscle movement progressively die, patients gradually lose the ability to move, speak, swallow, and even breathe on their own; the body seems to be gradually frozen, which is why it is commonly called “frozen person disease” (“jianbing zheng”) in Chinese. Because the cause is unknown, the disease currently lacks effective therapy, and most patients die of respiratory failure within 2 to 5 years. The most cruel part is that the vast majority of patients keep their consciousness and memory clear throughout, meaning we can only watch, helplessly, as our own bodies lose control bit by bit—this “conscious imprisonment” is an extreme torment of body and mind.

The ALS community has long been trapped in three survival dilemmas: first, there is currently no effective treatment plan for the disease, and patients' survival period is generally short; second, as the disease progresses, patients gradually lose the ability to care for themselves, daily life depends on 24-hour care, complications are many, care procedures are complex, and the manpower and energy consumed in caregiving are enormous; third, the expenses for life-sustaining ventilators, eye-tracking devices for communication, rehabilitation equipment, and the like are large, adding to the family's financial burden.

Our greatest wish is to obtain an effective treatment as soon as possible, to restore the ability to live independently, and to have a more complete life.

I became ill in 2009 at the age of 24, and have now lived with ALS for a full 17 years, making me one of the “lucky ones” in this patient community. Now my muscles throughout my body are severely weak and atrophied; my lower limbs have completely lost function and I cannot stand; my arms are too weak to raise; only the middle finger of my right hand retains a faint bit of strength to barely operate a mouse. The strength of my trunk, waist, and abdomen is very poor, making it hard to sit for long, and I lie in bed for more than 18 hours a day. My respiratory muscles have severely declined, and I depend entirely on a ventilator for assistance. I have difficulty swallowing and can only sustain my life by injecting liquid food through a feeding tube. My speech function, impaired by respiratory distress, is also increasingly affected. But even though my body is tightly trapped, I have never stopped fighting. Since 2010, I have persisted in collecting and translating foreign materials on ALS—disease knowledge, research news, progress on new drugs, rehabilitation and care experience, and so on—totaling over 2 million words, which I have organized and posted on patient forums for everyone to study and understand, lighting a little glimmer for fellow travelers and bringing them a trace of hope.

Illness has changed a great deal, but illness cannot define us. In the ALS community, I have seen patients who persist in working despite their illness, patients who write tirelessly using eye-tracking devices, and family members who, through long years of caregiving, have never once given up. Illness has taken away our ability to move, but it can never take away our right to love life, care for our families, and pursue dignity!

In recent years, the development of medicine has also let us see new hope. More and more researchers, medical workers, enterprises, and charitable organizations are investing in ALS research. New treatment targets keep emerging, and new clinical trials continue to advance. Although there is still a long way to go before completely defeating the disease, every bit of progress gives us one more measure of conviction to fight it.

You are carrying out the challenge of crossing the Atlantic alone in a small boat, facing 20-foot waves, endless nights, continuous physical exhaustion, and day-after-day loneliness—just as we face our long years. Much of the time, we cannot decide the direction of the waves, but we can decide whether to keep rowing the oars in our hands. Thank you for being willing to set sail carrying the voice of the rare-disease community! For us, being seen is itself a kind of strength. A rare disease is not a cold medical term, nor a proportion in a set of statistics. Behind every patient there is a real life, a living family, and many dreams not yet realized. You cross the vast ocean with your hands; we cross a frozen life with our courage—this perseverance is, in essence, the same. Though we are in different circumstances, we share the same tenacity that refuses to admit defeat. When the days and nights at sea are hard to bear and body and mind are weary, please remember: every time you row, you are, on behalf of the rare-disease patients trapped by illness, rushing toward the world. However great the wind and waves, we are watching over you from afar.

Finally, I want to say to the ALS community: please do not doubt the value of life because of illness. The meaning of life lies not only in how far one can go or how much one can do, but also in how one faces difficulty, how one loves others and oneself, and how one still keeps dignity and hope in adversity. I also want to say to myself: though the body is frozen, the spirit will never wither; use what limited ability you have to warm fellow travelers; be forever strong, with a heart at peace!

May the near future come when ALS is no longer an unwinnable, drawn-out farewell; may your beloved be settled and healthy, and keep getting better; and may you and I both cross the wind and waves and reach the far shore of our own lives.

With respect,

and my salute!

Cao Wendong, a person with ALS

June 21, 2026, World ALS Day

Enclosed with this letter is an essay I wrote in 2015; I respectfully ask for your comments.

Happiness and Joy

Happiness and joy—we often bring them up in daily life, but if we think carefully, what exactly are they, what characteristics do they have, and how do we obtain them? These questions can easily leave one at a loss. It is just like our sense of time: so familiar that it accompanies us every minute and every second, yet so unfamiliar that it is hard to grasp and hold.

What are happiness and joy? This makes me think of a film starring Fan Wei. In this film, when the protagonist is asked what happiness is, he answers: “When I'm hungry and I see someone holding a meat bun, then he's happier than me; when I'm cold and I see someone wearing a thick cotton coat, he's happier than me; when I need to use the toilet and there's only one squat pit, and you're squatting there, then you're happier than me.”

Comrade Fan Wei's answer is quite down-to-earth and makes people chuckle. Happiness and joy seem to be just this simple, and yet seem not so simple. It can be a philosophical proposition, and it is also closely related to psychology; at the same time it is reflected in economics and behavioral science. It is abstract, yet also concrete; it is intangible, yet also tangible. It is both an existence we can really experience in life, and something that can serve merely as “chicken soup for the soul” spilled from pen onto paper.

In my view, happiness and joy are the spiritual pleasure that people experience in the process of change from “discomfort” to “comfort.”

Starting from this definition, we can extend and appreciate a great deal:

First, happiness and joy arise from comparison.

Just like states that coexist in opposition—beauty and ugliness, good and evil, challenge and opportunity—happiness and joy also need an opposite: a less comfortable opposite, such as hunger, thirst, pain, sorrow, worry, grief, and so on. Only by contrasting with these states can we possibly appreciate happiness and joy. When you are terribly thirsty, even tap water tastes sweet and delicious; the joy of that sweetness comes from the discomfort of thirst. When a mosquito bites a big bump and you scratch a few times, it feels so good; that comfort comes from the misery of the itch. In the era of eating chaff and wild vegetables, wrapping a batch of dumplings for the New Year was so joyful; now we complain that the New Year feels less festive, perhaps precisely because the hunger and cold that once served as contrast are gradually receding.

Of course, “discomfort” and “comfort” are also relative. They can be the truly “uncomfortable” and “comfortable” mentioned above, or they can be “comfortable” versus “more comfortable.” We are already in an age of constantly pursuing greater comfort—changing houses, changing cars, changing to a bigger TV, buying a more fashionable phone—often not because the old things can no longer be used, but because we expect something better. In the contrast between better and good, we feel happiness and joy.

The comparison mentioned above is mainly comparison with one's own state, but in life there is another kind of comparison that cannot be avoided—comparison with others. So-and-so was my classmate, and now their income is such-and-such, their house is so big… Humans are social animals, and comparing ourselves with others is an ineradicable factor in our nature. There is nothing wrong with this; it is even one of the drivers of improving our own conditions of survival. Interestingly, we often say “worse off than some, better off than others.” Comparing upward, what we experience is often envy and jealousy; comparing downward, what we gain is ease and joy. In other words, we may be more willing to compare downward.

One might say that without misfortune there is no happiness, and without pain there is no joy. The reason we must endure misfortune and pain is, to a large extent, because we want to pursue happiness and joy.

Second, happiness and joy are destined to be brief.

Since they exist within the process of change between two states, they are necessarily brief. When we hear a joke, we laugh “ha-ha” and it passes—a few seconds at the short end, a few dozen seconds at the long end; if we laughed for a day and a half, we would get muscle cramps. Why did the Creator not design our happiness and joy to be a bit longer and more lasting? This question probably has no definite answer—or perhaps it is precisely because they are brief that they are precious, and so we cherish and pursue them.

In the final analysis, our life is made up of one matter after another, and among these matters, great and small, the vast majority require us to expend our minds and strength, bear pressure, and possibly suffer failure, pain, and blows. From childhood we study and compete with others, attend all kinds of tutoring classes, take exams big and small; having finally entered university, within a few days we face employment pressure; after starting work we have to buy a house and start a family, and afterward there is our children's education and supporting our parents—and in a flash several decades have passed… Only in the brief gaps between these matters can we experience ease and joy. If life is inherently like this, then we can be at peace with it: since this is a law not shifted by our will, we simply do one thing after another, live day by day, bravely bear the pain, and at the same time cherish the joy.

Third, happiness and joy are highly subjective.

Since they are experienced by an individual, they are highly subjective; the kinds differ, and the degrees vary greatly. For example, Chairman Mao loved to eat spicy food and fermented tofu, and especially loved braised pork, which had to be fatty; he claimed braised pork could nourish the brain, and said he defeated Chiang Kai-shek while eating braised pork. But this dietary habit that brought Chairman Mao joy was sneered at by Jiang Qing as that of a country bumpkin. You find Guo Degang's routines funny, while he himself is keen on the understated style of Ma Zhiming; some people like to read and listen to music quietly and delight in their own company, while others love parties and lively gatherings, roaming amid clinking cups and glasses, giving free rein to their spirits.

A side effect of this subjectivity, or one might say this individuality, is that we can, free from the fetters of material things, culture, and objective environment, pursue the happiness and joy that belong to us. And this, perhaps, is precisely the true meaning of life!

As one of the most “intimate” “companions” of my life, I cannot but say a word about the disease I have. My disease is scientifically named amyotrophic lateral sclerosis, a type of motor neuron disease, abbreviated in English as ALS, commonly known as “frozen person disease.” This disease is one of the five incurable diseases listed by the World Health Organization, alongside cancer, AIDS, leukemia, and rheumatoid disease. Because the motor neurons progressively die, patients gradually lose the ability to initiate and control voluntary movement; the muscles weaken and atrophy, and slowly one cannot move, cannot speak, cannot swallow, and finally cannot breathe—as if the body were being gradually frozen. The disease was discovered in 1874; because the cause is unknown, there is still a lack of a cure or effective treatment. After diagnosis, patients have an average survival of only 2 to 5 years, of whom 20% can exceed 5 years and 10% can exceed 10 years. The incidence of this disease is relatively low, only a few in a hundred thousand. Before the Ice Bucket Challenge that swept the globe last summer, the vast majority of people may have never heard of it, and even many medical workers did not know much about it.

That said, compared with even rarer diseases, ALS does have some degree of recognition, because there are several fairly well-known patients, such as the British theoretical physicist Stephen Hawking and the late American baseball player Lou Gehrig. The former is well known to the public for his popular-science book A Brief History of Time, and the film The Theory of Everything, based on his early life, won the Oscar for Best Actor in the most recent edition; the latter was a legendary figure in the history of American baseball, so much so that ALS in America is generally called Lou Gehrig's disease. In fact, there is another patient who could be called the most famous of all—the aforementioned Chairman Mao who loved braised pork. But in that era, his health was a top secret, so that even now few people know that what he had was ALS.

I became ill in 2009; my progression has been relatively slow, but now I have also completely lost the ability to walk and stand, my upper limbs are severely impaired, I cannot take care of myself, and my breathing is somewhat poor, occasionally needing ventilator support. The fastest-progressing patient I have seen went from onset to death in only 10 months, changing almost daily. There are also some severely ill patients who are completely paralyzed in bed, with only their eyes able to move, needing a ventilator 24 hours a day, their food having to be blended into liquid and then pumped into the stomach through a stoma in the abdomen. I once fell into confusion: in a state like ours, are we really alive? Perhaps there truly exists a third state between life and death. And so comes the question that troubles many patients: amid the torment, why keep living? To wait for a miracle? For family? Or simply because a poor life beats a good death? Perhaps, but these answers are too concrete and have their limitations; a conviction supported by them may well collapse in the face of ever-increasing pain. In the end, I found my own answer: hold fast to life, do the things I can do and want to do, and experience the joy and beauty I can still feel!

Finally, happiness and joy lean more toward the spiritual and psychological level.

An abundance of material life can bring us comfort, but does not necessarily bring happiness and joy—indeed, too much material abundance may even lower our sense of happiness and give rise to the question, “Are you happy?”

In the final analysis, all material and external stimuli must pass through the sensory system to become nerve signals and impulses that enter our brain, and are then reflected as all kinds of feelings. A while ago I watched the film Blind Massage, in which a blind person does not know what beauty is. Come to think of it, it is true—this is a completely abstract concept; without vision, how can one perceive and distinguish beauty from ugliness!

My disease has a characteristic: throughout its course, the patient's sensation, thinking, memory, and other functions are mostly unaffected. This is quite terrifying, because you have to watch, helplessly, as you continually weaken toward death, unable to skip over any bit of pain in the whole process. Many patients are anxious and tormented by this, especially those who, because of illness, have been left by spouse and children, isolated and helpless, and must also suffer the ups and downs of human warmth and coldness. But looking at it from another angle: if one lost thinking, memory, and spirit, and no longer had the ability to perceive love and beauty, could one still be called human? After all, this is precisely the essential difference between humans and ordinary animals.

So how exactly do we obtain happiness and joy? Or rather, how can we obtain more happiness and joy? I think we still have to start from the characteristics of happiness and joy.

First, make good use of comparison.

Since happiness and joy arise from comparison, we should make good use of comparison.

First, again, comparison with ourselves. Of course, we should not deliberately create “discomfort” for the sake of comparison; rather, we should constantly and actively create “more comfort,” which is complementary to a positive and upward attitude toward life. Everyone has a circle that confines them, concrete or abstract; at birth the circle is smallest, and then, actively or passively, intentionally or unintentionally, it gradually expands—learning more knowledge, walking farther, making more friends… In this process, we should try to actively and intentionally set goals and strive for them, avoiding drifting with the current. This attitude can be everlasting, whether the objective environment is superior, terrible, or cruel.

In my university dormitory there was a brother whose father brought him to school, and on leaving said to him: “No matter when, always live in a way that looks the part.” This sentence carried a kind of solemn tragedy, which is why it left a deep impression on me. This roommate's family circumstances were ordinary, and his food, clothing, and daily expenses were plain and simple. He didn't have many clothes, but he paid great attention to matching them; his furnishings were simple, but he was very good at arranging them. Friends who have seen a university dormitory will surely relate deeply: many are as messy and dirty as a pigsty, clothes and shoes piled in utter disorder everywhere, but his bunk was always neat and clean—before sleeping he folded his clothes neatly and placed them at the head of the bed, and after getting up he tidied his bedding flat and smooth, shaving and grooming meticulously, so that his whole demeanor was always fresh and spirited. Later I pondered why his father would say such a thing—perhaps because the family was going through hardship at the time, perhaps because he knew his son was dissatisfied with the school and especially the boarding conditions, or perhaps it was simply a word of instruction to a son about to begin a new life. But in any case, my roommate did it: in an un-superior, even harsh, environment, he always kept himself living the part—he scored the highest in the whole grade on the CET-6 exam, changed majors with high marks to pursue graduate study, and now has a family, a career, and stands on his own. Every year at our small reunions, I can still feel his ever-present vigor and spirit!

The other aspect is comparison with others. When in favorable circumstances, we should compare upward, so that we are not arrogant or overweening; when in adversity, we can compare downward, so that we are not despondent or self-abasing. The former is relatively easy to do; the latter involves the angle from which one views problems. Unlike the self-deceiving anesthesia of the “Ah Q spirit,” it should be based on facts and grasp the essence.

Back when typing was not as difficult as it is now, I spent a lot of time on QQ. The patient friends in the group came from all over the country, differing in culture, station, and experience, and so their attitudes toward problems varied greatly; there were often discussions and even arguments. I remember once, a patient friend said: “If only our disease were contagious like SARS and AIDS, then the state would take it seriously…” Looking back now, this was just his complaint and venting in adversity, but at the time I replied quite bluntly: “If ALS were contagious, the first victims would be our family and friends. Is that what you want?” Such comparisons among patient friends are not uncommon, and in fact they do not grasp the essence of the problem. Admittedly, the contagiousness of SARS and AIDS is indeed a reason the state and even the whole world attach great importance to them, but non-contagious diseases such as cancer and cardiovascular and cerebrovascular diseases also receive much attention. Therefore contagiousness is not the core; the key lies in social influence. To attract attention, one needs to find ways to raise social influence. In the past few years there were often rumors—that AIDS patients, taking revenge on society, put their blood into watermelons or into grilled meat, and so on. Such rumors, though they can form explosive social influence in the short term, result in people's fear, hostility, and further discrimination, falling into a vicious cycle. The ALS patient community should raise social influence in a positive way, showing our cherishing of life and our unyielding spirit in adversity, so that all sectors of society love us, respect us, and sympathize with us—rather than fear us, hate us, and reject us.

When patient friends complain about the pain of the disease, I tell them: for most of the disease's course, we will not have problems with pain, and even when we do, we can mostly bear it—this is better than the churning, tormenting pain of cancer; when we have this disease, our hearts are steady and open, and it will not infect our family—this is better than the possibly head-lowering sense of discrimination and the contagiousness of AIDS; the age of onset of our disease is mostly middle-aged and older, and most patients have a career, a family, and a basically complete life—this is far better off than the children who suffer from spinal muscular atrophy and progressive muscular dystrophy, many of whom do not live to adulthood, so that romance, work, and the like are entirely out of the question.

Making such comparisons can help us face adversity more calmly and better balance our state of mind.

Second, know yourself and understand your own true thoughts.

Since happiness and joy are highly subjective and personal experiences, one must know what one really wants and likes.

When Fang Zhouzi spoke of success, he said he believed success is being able to do what one wants to do while also contributing to society. I think this is very apt. Our education system and social culture often neglect the shaping of a person's individuality. In exchanges with peers, we generally feel confused: we have learned much knowledge but do not know what it is for; not only do we not know what we can do, we are not even clear about what we want to do or what kind of life we want. We muddle through university, step into society with little choice, and then get entangled in daily trivialities, unable to extricate ourselves.

On Youku there is a video program called On the Road (“Lǜxing”), which records a couple's travels and life. In their early years they sold tofu, sold tofu-making machines, and even ran a public toilet; later they joined a jewelry chain and life gradually stabilized. During the 2008 Wenchuan earthquake, they went deep into the disaster area as volunteers, shedding countless drops of sweat and tears in the process of saving lives. The fragility and smallness of life moved them greatly, and so the idea of changing their way of life sprouted. After careful preparation, they gave up their business and comfortable life and began to travel, seeking experiences that could help them understand that life, living, and survival are a challenge. They went to Somalia, which was in a state of anarchy with an AK-47 in every hand; to Chernobyl, a dead-silent place where the danger of nuclear radiation was everywhere; and to Oymyakon, the coldest place; they sailed around the world at sea, proposed at the North Pole, held a wedding at the South Pole, and recently began a westward journey through 80% of the world's war-torn countries… Although the journey was full of hardship and danger, they were doing what they truly wanted to do, experiencing in it their own romance and joy.

Life is short and full of the helplessness of being unable to act as one wishes. We may not be able to be as free and unrestrained as they are, but when conditions permit, we should follow the feeling in our hearts and live for ourselves.

Third, focus on pursuing the richness and elevation of the spiritual world.

Since happiness and joy lean more toward the spiritual and psychological level, in the process of pursuing happiness and joy we need to focus on the stimuli that can more deeply touch our spirit, psychology, and soul, and that require more advanced skill.

In today's highly civilized human society, leisure time is more and more abundant, yet a series of “diseases of civilization” have arisen—for example, violent incidents emerge one after another, drugs are rampant, and chronic mental afflictions such as depression keep increasing. One of the causes of these problems is our fear of emptiness and boredom—people need to be busy, but cannot find suitable stimuli to keep themselves busy.

In Zweig's The Royal Game (“The Chess Story”), such a character is portrayed: when Germany annexed Austria, he was framed and imprisoned in a bare, four-walled room, and amid boundless emptiness and loneliness cultivated a talent for chess by means of a stolen chess manual. But playing against himself for a long time, with no board and no opponent, led to a split of the mind, even to madness. Although this novella is an indictment of the torment and destruction of the human soul by Nazi fascism, the phenomenon it describes has great real-world significance.

When I was a child, a small alley near my home was full of mahjong parlors big and small, the clacking sound endless all day long. In my university days, some classmates ate and slept in internet cafes for weeks or months playing online games, claiming that once they left the cafe they didn't know which way to walk. I used to think they whiled away their time like this out of boredom; only now do I understand that they whiled away their time like this out of fear of boredom. Yet such low-end or repetitive activities easily make people feel dull and further destroy their will, ultimately becoming spiritual opium. Engaging in such activities does not bring happiness and joy, but is merely to avoid pain.

The most enchanting and wholesome activities are often those that require the highest skill and patience, such as scientific research, literature and art, and skill-based sports. Yang Zhenning once mentioned that Dirac's papers give people the feeling of “autumn-water prose untainted by dust”—no idle words at all, going straight to the essence, straight to the mysteries of the universe. We ordinary people probably find it hard to understand Dirac's work, and so cannot feel the joy Yang Zhenning experienced, but that beautiful feeling must be very advanced, very lucid, and very enchanting. Emulating the worthy is a quality built into our genes, and setting one's sights high is but a single thought away!

Fourth, help others obtain happiness and joy.

There is a certain degree of self-interest in human nature, but at the same time a considerable proportion of altruism. Facing the weak, we can't help but feel sympathy; seeing others suffer, we feel we cannot bear it. In the face of disaster, examples of sacrificing oneself to save others are common. Those who help others expend their minds and strength, dig into their own pockets, and even risk their lives, to save strangers they have never met and will very likely never see again. In everyday life, too, we often contribute our time, energy, and money knowing full well there will be no return—such as donating money, giving blood, volunteering, giving directions to strangers, and so on.

These acts of goodwill seem to run counter to the fabled selfishness of human nature, but they undoubtedly make the community we live in warmer. Social exchange theory offers an explanation for altruism: helping others can in fact bring rewards. Rewards fall into two types, external rewards and internal rewards. Those who help others can win people's praise and raise their social prestige; if they help blood relatives, they can also increase the chances of their own genes being passed on… these are all external rewards. Internal rewards are equally important. When we do a good deed, we often feel we are more worthwhile. When we bring others a good mood, our own emotions rise along with it. Helping others can bring joy to oneself, hence the saying “joy in helping others”; and when we are in a good mood, we are especially willing to relieve others' worries and difficulties, which is the so-called “delight in helping others.”

The pursuit of happiness and joy is a fundamental driving force of life, and also one of the natural rights and meanings the Creator has bestowed on life. I wish all my friends, no matter what circumstances they find themselves in, the ability to experience happiness and joy!

To Auntie Amy, who is conquering the ocean:

I hope this letter finds you well.

When you are in the cold seawater of the North Atlantic, facing the dark night and the huge waves, please know that on a faraway land, a small little life is breathing and holding on together with you.

My name is NONO, and I am 9 years old this year. I am a child with isolated methylmalonic acidemia. This is a rare metabolic disease. Because my body lacks a little helper called “methylmalonyl-CoA mutase,” I cannot metabolize and absorb the protein in all foods—rice, noodles, vegetables, meat, and so on—the way other children can. These delicacies for ordinary people turn into organic acids that pile up in my body, making my blood acidic and my urine acidic, and I often have acidosis. So I have another name too: “Lemon Baby.”

Every mouthful of food I eat has to be precisely calculated and weighed like a chemistry experiment. Every day I not only have to eat specially made low-protein food, but also drink a special formula powder with an almost unbearable taste, and take a lot of medicine on time; Mom is also always giving me injections at home. Even though we all try very hard and are very careful, the buildup of these acids in my body can still damage my brain, kidneys, heart, and nervous system at any time, and may trigger convulsions, coma, intellectual regression, growth arrest, organ failure, and even put my life in danger.

My world is made up of special milk, medicine, and blood-test reports.

For us Lemon Babies, the biggest challenge is not being allowed to get sick. For others, a sneeze might just be a cold, but once we run a fever or have diarrhea, we could develop acidosis and be in life-threatening danger at any moment, and have to rush to the hospital for emergency treatment. We cannot run freely in the sunshine like ordinary children, because the body's “engine” might stop working at any time. Sometimes, watching other children eat delicious food, eat all kinds of snacks that look so tasty, or watching them run and jump, I not only feel envy, but also feel an enormous, tidal-wave-like loneliness.

But, Auntie Amy, when I heard that you are going to row a boat across the Atlantic for 50 days, I thought you were so cool! On the sea you face raging waves, with no supplies and no way to retreat, fighting the wind and waves 24 hours a day in rotation—this fearlessness inspires me to fight the crises inside my own body. You use your hands to row and measure the ocean; I use my will to fight the disease. This makes me feel that although we face different challenges, we are both waging a war without gunpowder smoke.

My mom is Liu Yingna, the head of the Lemon Baby Care Center. She told me that someone as amazing as you is also fighting a rare disease, and that your husband is an even more amazing warrior. We are all “comrades-in-arms” fighting hard. Lemon Babies fight the metabolic toxins in our bodies for a lifetime, just as you fight the wind and waves on the sea day after day; Lemon Babies keep to a restricted diet for life, take medicine for life, and wrestle with illness for life, just as you row, hold fast, and face unknown perils on the boundless ocean. Thank you for crossing the ocean carrying the heartfelt voices of all rare-disease patient friends, and for telling the world the stories we hide deep in our hearts, with no one to listen:

What we need is not only for someone willing to develop a specific drug, but even more for society's understanding of this “invisible disease”—we may look normal on the outside, but inside our bodies we are fighting toxins at every moment. We cannot be cured, but we can be diagnosed early through newborn screening and treated early, and then we will grow up as normally as possible. We need to control our diet for life, but more and more manufacturers are willing to produce special low-protein foods for us, and in the future there may be chocolate, ice cream, and egg pancakes that we can eat… We are small yet tenacious, ordinary yet brave; we all deserve to be gently seen by the world, and we will always have the strength to live well… Your boat may be only 4 square meters, but it carries the hope of connecting rare-disease patients with the real world.

I want to say to you: you are not only a hero on the sea, but also the hero of all of us Lemon Babies. May the wind and waves treat you gently, may your boat sail smoothly all the way, may you fear no raging billows, arrive safely at the far shore, and successfully complete this expedition of speaking up for love and pressing forward for rare diseases!

With respect!

Little NONO, a Lemon Baby

Beijing, June 2026

Dear Amy,

Hello! I am the mother of a child with Duchenne muscular dystrophy (DMD). My name is Wang Lihua. I am writing this letter today, entrusting Kōde to deliver it to your side, hoping that out on the vast Atlantic you can hear the cry that we DMD families keep deep in our hearts, and can feel, through these words, our tenacity!

You may be hearing the name of this rare disease, DMD, for the first time too. DMD is the English abbreviation for Duchenne muscular dystrophy. It is a fatal X-linked recessive rare genetic disease that almost exclusively strikes boys. The affected child's body lacks the dystrophin protein that repairs muscle, so the skeletal muscles, cardiac muscle, and respiratory muscles throughout the body continuously and irreversibly atrophy and degenerate. Around age 3 the child frequently falls and walks unsteadily; around age 10 he completely loses the ability to walk and depends on a wheelchair for life; in the later stage, heart and lung function are continuously impaired. There is currently no cure. Gene therapy drugs have been approved and marketed in the United States, Japan, Saudi Arabia, and other countries; China is still in the clinical stage. Unfortunately, the DMD-causing gene is far, far too big—it is the largest gene in the human body known to us at present—so gene drugs, too, only slow the disease's progression. In the past, most patients' lives were fixed at the adolescent stage. Now one can choose long-term steroids, rehabilitation stretching, and ventilator-assisted breathing to delay the ability to walk by several years or even more than ten years, and to prolong life. There is now a new steroid drug developed for DMD patients with fewer side effects, vamorolone, but unfortunately the vast majority of ordinary families in China find it hard to afford long-term. We often see hope, yet painfully find that the light of hope has not yet shone into reality.

I once had smooth sailing—loved by my elders, cherished by my parents, accompanied by my husband, having started a family and a career and given birth to a child, everything I sought coming true; I thought this would be my whole life. I never expected that the muscular dystrophy that my college textbook once mentioned only in passing would fall on my beloved son. We have no family history; the pregnancy went smoothly, my diet was healthy and my emotions stable, all the prenatal check-ups got the green light, the delivery went smoothly, the child's cry was loud and clear and even praised by the midwife, and the newborn score was perfect. One episode of spitting up milk, one hospital visit, one blood test, one genetic test—and in the end we received a diagnosis. My lovely son, at just over forty days old, had already begun the countdown of his life!

I taught him to walk and to feed himself, only to watch, helplessly, as years later he loses the ability to walk bit by bit, comes to depend on a wheelchair, then—his upper limbs too weak—can only accept being fed, and finally depends on a ventilator to breathe and a nasal feeding tube to eat—and by then he may only be in his twenties or thirties, the age when one should be in high spirits! I am a nurse; I never imagined that everything I learned would in the end be used entirely on my own son.

Over these years, I have never resigned myself to fate. The whole family works together to care for the child—daily rehabilitation stretching, giving medicine on time, going for follow-ups on time; I keep consulting materials at home and abroad, connecting with patient families and popularizing knowledge of the disease. I have joined the management committee of the national alliance of DMD patient families, devoting myself to raising the popularization rate of standardized treatment, uniting the strength of the community, jointly promoting the development of new drugs, and personally supporting basic research. In others' eyes I am forever tenacious; only I know that on countless deep nights I too shed tears, then once again gather up my emotions and accompany my child to face each day's challenges. I have no earth-shaking heroic deeds; I am just one of tens of millions of DMD mothers, an ordinary person unwilling to admit defeat.

Our DMD community is facing all kinds of hardships. First is the heavy economic pressure. Long-term steroids, rehabilitation equipment, regular cardiopulmonary examinations, ventilator consumables—more than 70% of families spend over 60% of their total annual income on medical care, and many families are forced to empty their savings, borrow from all directions, and even interrupt standardized treatment. Second is the lack of social awareness and the discrimination. Many grassroots doctors are unfamiliar with DMD, so children are easily misdiagnosed and miss the golden intervention period; schools lack accessibility facilities, so children in wheelchairs find it hard to attend school normally; the strange looks of passersby and the uncomprehending gossip of others make children feel inferior and withdrawn, and also burden family members with invisible psychological pressure. Third is the double torment of caregiving and survival. As the child's muscles keep declining, turning over, dressing, and using the toilet all require all-day care by family members, and many mothers are forced to give up work, causing family income to plummet like a cliff; and once the child's breathing and heart are impaired, even a small cold can endanger his life—we live every day in fear and anxiety. Fourth is the remaining gap in the protection system. The vast majority of localities have not included DMD among chronic and special diseases, vamorolone is not covered by medical insurance and the cost pressure is high, and the popularization of rare-disease screening and genetic counseling is insufficient, so many families still face unknown risks when having children.

We do not beg for pity; we only hope to be seen and treated fairly.

What I want to say to Amy, who is braving the wind and waves

Learning that you are going to row a two-person, human-powered boat across three thousand miles of the Atlantic, carrying the voice of the rare-disease community across the ocean, I am filled with heartfelt admiration and deep emotion.

You must face 20-foot waves, rowing day and night without rest, endless exhaustion and loneliness, and the sea's changeable extreme weather—just as we DMD families, day after day, fight the disease that slowly erodes the body; both are a long, bitter struggle with no end in sight, one we can only get through by gritting our teeth.

On the sea there is no supply ship; you rely solely on your hands to fight the sea. In our lives there is no specific drug as a backstop; we can only fight fate through day-after-day perseverance. The oars in your hands are your strength to move forward; our day-after-day companionship, rehabilitation, and running around are the oars that protect our children.

However great the wind and waves, do not be afraid; when weariness sets in, read this letter. We, tens of millions of rare-disease families, will be watching over you from the land. May the sea wind soothe your weariness, may every stroke bring a harvest, and may you arrive safely. You are carrying the stories of rare disease to the middle of the ocean on our behalf, letting the whole world hear our voice—faint, yet never ceasing. You are the hero of us all!

What I want to say to every ordinary person

Please have a little more patience, a little more understanding, and set aside your unfamiliarity with and prejudice against rare diseases. Rare diseases are not far away—out of every hundred newborns, one is a child with a rare disease. DMD children are not “weak and delicate”; their muscles are simply continuously failing. Rare-disease families are not a “burden”; they are just ordinary people protecting a life with all their might.

I hope hospitals will improve early screening and multidisciplinary diagnosis and treatment for rare diseases; I hope medical insurance policies will keep tilting toward us, so that life-saving drugs are no longer out of reach; I hope campuses and public spaces will improve accessibility facilities, giving children in wheelchairs an equal right to study and travel; I hope the public will cast fewer strange looks and show a little more inclusion and kindness.

Only by seeing the rare will we keep countless vivid lives from being submerged in corners no one knows.

Even though the road ahead is full of suffering, I will never stop my steps of protecting my child. Day after day of persistence, year after year of holding fast—with a glimmer of light, I will hold out against the long years! I hope this generation of DMD patients can receive better treatment, and that in the future they too will have the chance to follow in Amy's footsteps and take part in extreme-sports challenges!

Wang Lihua, mother of a child with DMD

June 21, 2026

A Letter to Amy: The Heartfelt Words of a Mother of a Child with Glycogen Storage Disease

I. About glycogen storage disease

My daughter, a lively and lovable little girl full of curiosity about the world, was found to have abnormal liver function during a check-up when she entered kindergarten at age 3. A follow-up examination then found her liver to be enlarged, and she was diagnosed with glycogen storage disease type VI (GSDVI), a rare congenital metabolic genetic disease.

Simply put, her body lacks a key enzyme—liver phosphorylase—which means the liver cannot normally break down glycogen to release glucose. This means her ability to regulate blood sugar is extremely weak, and she faces the risk of hypoglycemia at any time. Over the long term, it may trigger complications such as an enlarged liver, developmental delay, and muscle weakness. At present, there is no curative drug for this disease. The child must strictly control her diet for life, eat snacks at set times, and take raw cornstarch over the long term to maintain stable blood sugar.

As a mother, I once thought my daughter's childhood would be the simple joy of running, playing, and sharing snacks with friends. But glycogen storage disease has made all this extraordinarily difficult—she cannot casually eat a piece of candy, cannot miss a single snack, cannot stay overnight away from home, cannot sleep a complete night's sleep the way we do…

II. About myself

I am a mother of two children. My eldest is already in the fourth grade of primary school, and my second is the girl chosen by glycogen storage disease. I live in Xi'an. Before my child was diagnosed, I worked a busy job at a company—fast-paced and high-pressure—but at the time I felt that this was just how life rushed forward. After the diagnosis, I switched to a relaxed job at a state-owned enterprise; my income is less, but I have more time—I need this “relaxation” to take care of my family. Monitoring blood sugar at set times every day, preparing special meals, getting up at set times during the night to feed cornstarch—these fine and precise tasks fill my daily life.

III. About our glycogen storage disease family community

We families with glycogen storage disease face many hardships unknown to others:

Awareness is extremely low, and misdiagnosis is frequent. Many grassroots doctors have never even heard of this disease, and when the child's condition flares up, it is often misdiagnosed as ordinary hypoglycemia, hepatitis, or other diseases, delaying the best treatment opportunity. We have seen too many families move from hospital to hospital before diagnosis, going through a long and anxious wait.

Continuous financial pressure. Special diets, long-term blood sugar monitoring, regular examinations, raw cornstarch, and other daily expenses, together with the costs of repeated hospitalizations, are a burden even for an ordinary family. What is even more frustrating is that many treatment and care costs are not covered by medical insurance.

Life is restricted at every turn. The child cannot eat snacks normally, dine out, or board at school; going to school and traveling both require meticulous advance planning. Every time we go out, we must carry a glucometer, cornstarch, and emergency food with us. Other children can run freely, but our child must be on guard against a sudden attack of hypoglycemia at all times.

Parents bear enormous psychological pressure over the long term. On so many deep nights, I set an alarm and get up to feed my daughter cornstarch, watching her sleep be interrupted—both heartbroken and helpless. Long-term sleep deprivation, anxiety, and uncertainty about the future are like an invisible string, taut in the heart of every parent.

But we want everyone to know: a rare disease is not a “minor illness,” and children with glycogen storage disease are not so “special” that they cannot live normally. They simply need more meticulous management, and more understanding and inclusion. With standardized care, the child can grow up steadily too, and can have a wonderful life of her own.

IV. What I want to say to Amy

Hello, Amy.

When you decided to paddle a kayak across the Pacific alone, I knew that you had already chosen a road few people take. This road is lonely, long, and full of the unknown—just like the challenges we rare-disease families face every day.

But facing difficulty head-on is itself the greatest bravery. We are all in a contest with unpredictable fate; this road is strewn with fine-grained suffering, but if we persevere, we will see the light. When you feel weary out on the vast sea, please think of us families who are likewise fighting illness on the land—your courage is also giving us strength.

May you have the confidence to overcome every difficulty and not fear a rugged road ahead. I wish you all the best, and that everything comes with a sweet aftertaste. When the Pacific wind blows across your oars, please remember that in faraway Xi'an, China, there is a mother and her daughter cheering you on.

V. What I want to say to patient friends and family members around the world

To all patient friends and to all parents walking alongside us:

We do not have to shoulder all the exhaustion alone. Illness brings much helplessness, but we have never been fighting alone.

Take good care of yourselves; you don't have to force yourselves to be strong all the time, and it's okay to be fragile now and then. After weeping in the dead of night, when day breaks we must still stand up, prepare the next special meal for our child, and monitor the next blood sugar reading.

Believe that medicine is always advancing. From gene therapy to enzyme replacement therapy, the steps of research have never stopped. Hold on to every bit of daily caution, and the days will slowly get better. We accompany one another and warm one another; the future will surely hold more hope.

Please remember: we are not “fighting against” our children; we are, together with our children, gently fighting against the imperfections of this world.

VI. What I want to say to society

I hope society can leave a little more inclusion and understanding for the rare-disease community.

Please do not look at special children with strange eyes. They may look a little different from other children—a slightly bigger belly, a slightly shorter stature, unable to eat the snack you hand them—but they equally long for friendship, long to be accepted, and long to have a childhood in which they are not treated differently.

Please give us more convenience in seeking medical care, going to school, and traveling. A quiet place for a snack, an understanding that allows carrying special food, a moment of kindness free of strange looks—all can let us feel the warmth of this world.

Please popularize rare-disease knowledge, improve related medical protection, and ease the financial burden on families. Rare-disease patients and families are just a group of ordinary people protecting their children with all their might. A little understanding and kindness can hold up the hope of our entire family.

VII. What I want to say to myself

Though there are ten thousand hardships, I will still be gentle and firm.

I am a mother, a wife, a daughter, and also the one who sets an alarm and gets up in the dead of night to feed cornstarch. I may get tired, I may feel anxious, I may occasionally doubt the future, but I will not give up.

Walking slowly alongside my child, guarding every day and every night. Together we look forward to the day when the medicine appears and cures the children. Until then, I will be her most solid backing and her most patient gardener, so that in my garden she too can bloom into her own flower.

With respect,

A mother of a child with glycogen storage disease

June 2026

Dear Amy,

What I have is tenosynovial giant cell tumor (TGCT), a disease that eats away at bone.

My own lesion is in the knee joint. In 2024, through drug control and surgical treatment, my life is now unhindered except for strenuous exercise.

Thinking about it, it's quite amazing—I got this disease just as I started my freshman year, and now I'm already a junior. Before long I will also go from being a student to a working professional, ushering in a change of identity.

If you were to ask me what I have learned since getting a rare disease, I think it's that plans can't keep up with changes. In my freshman year I was full of ambition, starting a new life in a new place, with my parents not around and no one to rein me in. But once I learned I had this rare disease… all I can say is, man proposes, but Heaven disposes—haha.

Here I also want to say to Amy: sometimes, when things turn out as you wish, that's great; and when they don't, that's okay too. Life is unsatisfactory eight or nine times out of ten. Many things are simply fate—just do well what you can do in the present, and that's enough.

—— Zheming

Dear Amy,

I don't know what day at sea this is for you.

Right now, is it the sunshine, the starry sky, or the pitch-black wind and waves that keep you company? What difficulties have you encountered these past few days? When the waves beat against the boat again and again, when weariness and loneliness set in, we hope this letter of ours can cross five thousand kilometers of sea and bring you a little strength, a little warmth.

We are a group of patients with Peutz-Jeghers syndrome (PJS). This is a hereditary, tumor-related rare disease. From childhood, the dark spots on our lips have been like a mark we can't shake off; in many places, it is misunderstood as a symbol of “bad luck.”

As we grow up, we have to face the continuously growing polyps in our small intestine, face the risk of intestinal obstruction and intussusception, and face one abdominal surgery after another. Even heavier is our far higher-than-average risk of cancer. Our long lives seem to be filled with endless examinations, re-examinations, and surgeries. What many people fear most is not the pain before their eyes, but not knowing on which day the diagnosis that reads “cancer” will arrive—the suffocating feeling of that moment is enough to completely engulf a person.

We have no specific drug, nor an anti-cancer vaccine that could eliminate fear with a single shot. Even if we remove the polyps today, in the future they may still grow back. Repeated abdominal surgeries are like installing a zipper on our bellies, the intestines cut segment after segment, and body and heart become extremely fragile amid this repeated wearing-down.

But we have never stopped declaring war on the disease.

Over more than twenty years, through the joint efforts of patient friends and doctors, we have built a nationwide patient network, contacted experts in various places, and set up green channels for medical care. More and more patients can find, at the first opportunity, the doctor nearest to them who best understands PJS; more and more people have avoided unnecessary suffering; more and more cancers are detected at an early stage, winning precious treatment opportunities.

And behind all of this is a person we will never forget—Sister Meijuan. On June 15, 2026, she ended her own life due to depression.

She was an ordinary patient. She had undergone 1 abdominal surgery and 2 bouts of breast cancer; countless enteroscopies left her 170-centimeter frame weighing less than 90 jin (about 45 kg). Even so, over 19 years she devoted all her private time to QQ groups and WeChat groups, helping more than 2,000 patient families. She set up more than 80 groups for hospitals across the country, organized materials, and shared experiences, never taking any payment. She shared without reservation the expert resources and medical experience she had accumulated over many years, patiently listening to and comforting every patient friend in difficulty. She said: “With a rare disease, the more people who know about it, the better.”

Regrettably, in the end she did not get to travel, sing, and learn English after retirement, to realize those ordinary and beautiful dreams. She helped so many patients and families, yet she herself was crushed by depression. She once said with a smile: “In 19 years of being a rare-disease patient, I gained more than 2,000 good friends.” Her companionship to patients made us understand: when we bravely say “I am a rare-disease patient,” countless voices will respond, “So am I”; when we say aloud “I need help,” countless voices will say, “I need help too, and I am willing to help you.”

Amy, when you row with all your might in the vast sea, it's as if we see ourselves. You are contending with the wind and waves; we are contending with the disease. Before you is an ocean whose end cannot be seen; before us is a lifelong anti-cancer road whose finish line cannot be seen. But precisely because of this, we understand all the more the meaning of perseverance.

If there is ever a moment when you feel weary and want to give up, please remember: on the other side of the earth, more than two thousand PJS patients and families are cheering you on. We believe that every stroke you row forward will let more people hear the voice of rare disease; every wave you cross will bring hope to more patients.

Amy, please row on our behalf the far journey that Sister Meijuan was unable to complete, toward the other end of the Atlantic; perhaps this is Heaven's arrangement—that her unfulfilled wish continues forward by way of your oars. And please tell the world for us: the rare is not alone. Breaking the waves with our oars, we move toward the light.

May you safely pass through the storm and reach the far shore.

From the China PJS (Peutz-Jeghers Syndrome) Care Center

With respect

— — —— — —

Appendix: The only self-introduction Sister Meijuan left behind

“You need to get to the hospital quickly.” After I sent the message, I froze at the sight of the red exclamation mark on the screen. My thoughts were instantly pulled back to 22 years ago. Looking back at the surgical report from that time, my heart still races—the intussusception was as long as 30 centimeters; fortunately the bowel had not become necrotic. If I hadn't had surgery in time back then, I might not have had the chance to share my story here. If a colleague had not mentioned the detail that “dark spots are related to abdominal pain,” I might never have known that the lip spots I'd had since childhood were, as cause and effect, linked to the hundreds of polyps quietly growing in my digestive tract.

That was 2002; I was 24, and the abdominal pain began. A colleague at work told me that stomach pain might be related to polyps in the belly, and also connected to the dark spots on my mouth. As a child, I had noticed dark spots on my lips and oral mucosa, but my belly had never hurt, so I had never thought there could be any connection between the two. At the time, I didn't take my colleague's words to heart; after all, the abdominal pain passed after a while, and with the New Year approaching, I didn't pay much attention.

After the New Year, the abdominal pain became more and more frequent, and I suddenly remembered my colleague's words, so I tried searching online with the keywords “dark spots, polyps,” and was startled to realize that I might have a rare disease called Peutz-Jeghers syndrome.

This disease is mainly characterized by mucocutaneous pigmentation and multiple gastrointestinal polyps. Its prevalence is extremely low, only 1/200,000 to 1/8,000. PJS has onset from childhood; as the patient ages, gastrointestinal polyps gradually increase in number and size, which can cause various complications such as intussusception, intestinal obstruction, gastrointestinal bleeding, canceration, malnutrition, and developmental delay in children. In addition, patients have a higher risk of gastrointestinal canceration, and may also develop tumors such as pancreatic cancer, lung cancer, and gastric-type adenocarcinoma of the cervix. For a long time, among adolescent and young-adult PJS patients, most, because of repeated complications such as intussusception and intestinal obstruction, have been forced to undergo surgical treatment many times.

At that time, my abdominal pain was becoming more and more frequent—from once every month or two at first, to daily abdominal pain later—and I had to go to the hospital. Removing the multiple polyps in the digestive tract and preventing and treating the various complications they cause is the most important clinical treatment goal for this disease. Polyps in the stomach, proximal duodenum, and colorectum of PJS patients can be removed by gastroscopy and colonoscopy. In the outpatient department, I had polyps removed under colonoscopy and gastroscopy, but after staying in the hospital for over a month, my belly still hurt. I guessed that this must be caused by polyps in my small intestine.

Because PJS polyps can be distributed throughout the entire gastrointestinal tract, with the common sites, in order, being the small intestine, colon, and stomach, and most commonly the proximal small intestine such as the duodenum and proximal jejunum. Another study has reported that about half of patients show distribution throughout the entire gastrointestinal tract (with polyps in the stomach, small intestine, and colorectum), with a relatively large number of polyps, the small intestine being the site where PJS polyps most frequently occur. The polyps are mainly pedunculated, somewhat like grapes, with a small portion being sessile or broad-based polyps.

When searching for the disease online, I found only one post left by a patient friend seeking a consultation, in which he had left his mobile phone number. With trepidation, I dialed this phone number thousands of miles away. The patient friend told me that small-intestine polyp removal needs to be done by opening the abdomen while using an enteroscope in coordination. Simply put, after opening the abdomen, a small incision is made in the intestine, the enteroscope goes in and searches up and down the entire small intestine, and the polyps are all removed in one go. But the vast majority of regional hospitals do not have this technology, and even now there are still many hospitals that do not have this technique.

At that time I was still young, working alone away from home, with a meager income, and I didn't want to burden my family, so I chose to take antispasmodic drugs prescribed by the local hospital. At first they were effective—after taking them my belly stopped hurting—but after a while they lost their effect. Then I went to the local hospital to get Chinese medicine to drink; this Chinese medicine could relieve my abdominal pain symptoms—as long as I drank it my belly wouldn't hurt, and on any day I didn't drink it, it would hurt. I kept this up for over a year, and I knew I couldn't keep dragging it out like this; I had to deal with the polyps in my small intestine.

The patient friend told me that Shanghai Changhai Hospital could do it, so on March 15, 2005, I boarded the bus to Shanghai. At night I lay on a small bed in the living room of a guesthouse next to the hospital, tightly clutching the twenty thousand yuan I had borrowed, and didn't sleep all night for fear of it being stolen.

This time, at Shanghai Changhai Hospital, I received all-round treatment from Director Meng Ronggui of the anorectal department. Using a method combining enteroscopy and open abdominal surgery, Director Meng dealt with all the polyps hidden in my small intestine. This surgery not only solved my immediate suffering; more importantly, it spared me the risk of intestinal obstruction and intussusception that I might face in the future as the polyps grew, and the pain of the repeated abdominal surgeries that would come with them.

I remember that on the day I was discharged, the sunshine was so warm and the air so sweet—life turned out to be so wonderful!

While hospitalized at the local hospital, I also learned an exciting piece of news: a balloon-assisted enteroscope (enteroscope for short) that can fully examine the entire small intestine had come into being. Upon learning this news, I immediately searched online and found that this enteroscope could not only examine but also had the function of removing polyps. The enteroscope can enter the intestine through the anus or the mouth; once inside, it can clearly reveal the shape, size, number, and distribution of the polyps, and after finding them the doctor can loop a snare around the neck of the polyp and remove it using pure electrocoagulation or a mixed coagulation-cutting mode. If it could really succeed, then we would never again have to open the abdomen once every two or three years!

With an excited heart, I shared this discovery with my patient friend. He began to inquire everywhere about which hospitals had this equipment, contacting top hospitals and doctors across the country in hopes of finding a medical institution that could provide this advanced treatment. However, we found that at the time almost all hospitals used the enteroscope only for diagnosis, and most hospitals had reservations about—or were even unwilling to attempt—using it for polyp-removal treatment.

In early 2005, enteroscope technology reached an important turning point. This patient friend got in touch with Director Mao Gaoping of the gastroenterology department of the former Beijing Air Force General Hospital (“Kongzong” for short, now the Beijing Air Force Medical Center). After searching far and wide among relevant manufacturers, Director Mao specially custom-made a thin and long snare to suit the special needs of polyp-removal surgery under the enteroscope. In February 2005, Director Mao and his team successfully completed the first enteroscopic polyp-removal surgery for PJS, thus opening a new chapter of enteroscopic polyp removal in China.

The baton was passed from Director Mao to his student Director Ning Shoubin (now the director of the gastroenterology department at Kongzong). Under Director Ning's leadership, the department not only inherited the unique advantages of enteroscope technology, but also kept overcoming difficulties in practice and further refined this technique. Over 20 years, Kongzong has received more than 760 PJS patients, becoming the world's largest center for the enteroscopic diagnosis and treatment of PJS. During the busiest periods, the hospital even had 25 patients undergoing enteroscopic treatment in a single day.

Director Mao Gaoping and Director Ning Shoubin

Just when everything was going smoothly with the enteroscope, and we thought we would be worry-free as long as we removed the polyps regularly, a new challenge appeared: clinical data in recent years show that the incidence of gastric-type adenocarcinoma of the cervix in female patients is dozens of times higher than in ordinary people. This lurking killer is often missed by routine screening. As our patient community kept expanding and exchanges increased, we found that many patient friends had developed gastric-type adenocarcinoma of the cervix, and almost all of them were already at the invasive stage when diagnosed. It was not until the end of 2021 that we realized the danger of this cancer to our community.

At the end of 2021, through Dr. Chen Yiwei of Wandou SIR, we got to know Director Kang Yu of the gynecologic oncology department of Shanghai Red House Hospital, and set up a dedicated gynecology group. Director Kang has provided many green channels for our community, and also established the PJS Shanghai Multidisciplinary Alliance. Over the past three years, we have kept recommending patient friends to see Director Kang; so far more than a hundred patient friends have undergone examinations, but there are still many patient friends who have not yet had a gynecological examination.

Many patient friends, after problems are detected, can undergo timely surgery for early intervention and treatment. Some patient friends found to have cysts, lobular hyperplasia, or atypical lobular hyperplasia of the cervix, having understood their own condition, can choose regular monitoring to prevent the condition from worsening. And several lucky patient friends were found to have gastric-type adenocarcinoma of the cervix while it was still at the carcinoma in situ stage and had timely surgery, thereby avoiding more serious consequences.

A colleague's kind reminder, the help of patient friends, and doctors' brave exploration were like a seed that sprouted in my heart; I wanted to pass on this spirit of mutual help.

On February 24, 2006, at the suggestion of a patient friend, Sister Li, we set up a QQ patient group. Over 19 years, the group has brought together at least 2,000 patient family lines. Whenever a new patient friend joins, I can't wait to tell them everything I know.

I am more anxious than they are themselves, because I know the consequences of not getting proper treatment—that is, repeated abdominal surgery or even malignant transformation. This sense of urgency caused me to lose my sense of proportion when popularizing knowledge of the disease, causing panic among patient friends. People said that the daily discussion of illness in the group was frightening to see. Many chose to mute the group's messages, and some even suspected I was a medical tout (“yituo”) with some ulterior motive.

In the past, I always worried that patient friends would take detours: worried they didn't understand the disease and would thus delay their condition, worried they didn't know the medical channels and would thus fail to get the best treatment, worried they didn't take it seriously, worried they would avoid it… Especially in actual work, whenever something that moved me happened—such as a patient friend's canceration or death—I would unconsciously cause panic among everyone.

The establishment of the patient group meant we no longer fought alone or were left isolated and helpless. At first, I did not understand why they had an avoidant attitude. As time passed and with reminders from professional doctors, I realized that a healthy and optimistic positive mindset is the foundation for overcoming disease. I wondered: how to find a balance between publicizing knowledge of the disease and easing patient friends' state of mind? I made some changes—the patient group no longer allowed only discussion of illness, but also allowed relaxed topics. We also set up a chit-chat group, so that everyone would have a channel to release pent-up emotions. When publicizing knowledge of the disease, I also paid attention to priorities and to methods and approaches.

Perhaps many people wonder: why do I have such a complex about helping others?

Because I myself am a beneficiary of patient friends helping others.

I think summarizing my own medical experience can also reflect the improvement and progress in the medical situation of the PJS community over more than twenty years—a good way to encourage and inspire us and all rare-disease patient communities. Every rare-disease patient has gone through the journey from one person to two, to ten, and now to finding hundreds and thousands of patient friends.

When I typed out the welcome message for the 2,000th patient friend joining the group, the plane trees outside the window were putting forth new buds. On that night 20 years ago, curled up on the small guesthouse bed counting my banknotes, I never imagined that the moonlight slipping through my fingers would turn into starlight illuminating the whole community.

In today's chat group, a newborn's first cry and the “no abnormalities” of polyp re-examination reports flash across the screen in turn. The green channels of enteroscopy at more than twenty hospitals are like crisscrossing blood vessels, delivering hope to every life in need of treatment; healthy embryos conceived through third-generation IVF technology are stretching their spot-free skin in warm amniotic fluid; a message pops up at two in the morning—“just finished the enteroscopy,” all went well; and in the gynecology group, another gastric-type adenocarcinoma of the cervix has been caught by early screening!

Dawn never descends suddenly. It is the all-night light of the operating room on a winter night, the PJS Shanghai Multidisciplinary Alliance spontaneously founded by 18 experts, the “Guide to Seeking Medical Care” updated in relay by more than 2,000 patients in the group. These 22 years have taught me the most precious truth: hope is the most potent painkiller. The dark spots will not be branded on our lips forever; when we join hands and grow into a forest, those scattered, star-like marks will at last connect across the earth into a galaxy leading toward the dawn.