English translation
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