English translation
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