Facing the future
After she posted the news of her daughter' s death, Feng found she was not alone in her despair. Messages arrived, asking for help: "My child has SMA too - what can I do?"
She began to wonder how she could help these desperate parents.
The estimated 30,000 to 50,000 SMA patients are a drop in the ocean of China' s 1.37 billion population. The families felt too insignificant to be heard.
Feng learned more about the disease and its medical experts from Ma Bin, who only learned he had the disease in 1993 when he was 20.
"I often stumbled when I ran at the age of four; nobody knew what was wrong," says Ma. "Even in 2002, you could find nothing about the disease on a Chinese search engine."
He started to translate research and treatment files from English and put Chinese articles on his website. By 2011, fsmachina.org was an online home to more than 400 parents of SMA patients.
Apart from providing information, Ma thought he could do little for these families.
But Feng, as a public figure, could make a difference. Together they set up the Meier Advocacy & Support Center for SMA (MASC) in 2016.
"I was thinking of raising funds for more respirators at the beginning because the most common cause of SMA deaths is respiratory failure, but most families cannot afford such a device," says Feng.
However, respirators are highly technical medical devices, not household appliances. She and Ma decided to focus on introducing SMA to ordinary people and sharing day-to-day care techniques with patients' parents.
The disease has no cure, but massage and helping children to eat and sleep can increase their lifespan and improve their quality of life. "An SMA Handbook is much needed in China," says Feng.
On August 6, 2016, China' s first SMA meeting was held in Beijing. It was attended by experts from home and abroad and many Chinese SMA families.
"I was a mother and I' m very happy to see these children still with their families," says Feng. "I could do nothing for my daughter, but now I' m full of strength for their future."
One mission of the MASC is to make simple wishes come true for SMA children - a trip to the seashore and playing in the sand, for instance. "These kids cannot travel long distances because a common cold could kill them and their parents can' t take risks. But we will provide a professional team to keep them safe," says Feng.
A choice for all
"She is brave enough to tell her own story so many more people can learn about SMA and these children' s parents can also face the future," says Ma.
Feng is hailed as a "Super Mum" by the SMA parents for her dedication to helping them. They connect through Feng online or offline, and support each other, especially when a much-loved child loses the battle against the disease.
To Feng' s delight, a drug called Nusinersen from the United States is now being trialled as a treatment and creator Professor Kathryn Swoboda, of Massachusetts General Hospital, expects it could be released into the market next year.
This is an exciting news for SMA families who hope the drug will be sold in China.
However, Feng understands that such a drug for a rare disease is not listed in China' s critical illness insurance program as it is so expensive and only serves a small group of people.
Gene screening before marriage and in pregnancy is the best method to prevent SMA. The technology is already available in major hospitals and it simply needs 2 to 3 milliliters of blood. MASC is cooperating with a dozen maternity and child health care hospitals across China to collect data of SMA gene carriers.
"If I had known how Meier would suffer, I would have aborted the pregnancy," says Feng.
Every family has the right to make such a choice, says Feng. She once met a couple from a remote mountain area. When their first SMA child was born, they thought it was bad luck, yet they ended up with two more sick children because they were unaware of their SMA gene.
"Feng is a carrier, so we' d recommend her relatives at child-bearing age take the test," says Ma. If no SMA gene is found in either one of a couple, their children are safe. If it' s found in both, the defective gene could be edited out before an embryo is implanted.
"I don' t know if I will remarry or bear another child," says Feng. "But I have a dream that one day our care center will be gone and people don' t have to fear SMA, just as we no longer fear tuberculosis."
