English translation
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