'Super Mum' determined to cure children's illness

Feng Jiamei was once a celebrity, but she gave up her career to help children with spinal muscular atrophy. Liu Wei and Dai Ying report for China Features.

A decade ago, when she was age 19, Feng Jiamei had the world at her feet.

She traveled 250 kilometers from her hometown to Chengdu, the capital of Sichuan province, to appear as a contestant on a TV talent show called Super Girls.

Feng came fourth, but with her good looks and singing talent, celebrity followed.

She released three singles and starred in a couple of movies.

However, with opportunities to release an album and sign a contract with a movie studio, her destiny suddenly took a tragic - but ultimately more fulfilling-course.

Short-lived joy

On April 24, last year, Feng put a post on her Weibo microblog informing her 200,000 followers that her beloved daughter, Meier, had died from a rare genetic condition, called spinal muscular atrophy, in 2014.

The post went viral within 24 hours.

"I spent one and a half years thinking about her death and wondering how to tell the public," Feng recalled, through her tears. "I was so desperate to find a partner and have a child."

At 25, when she was pregnant, Feng daydreamed about buying clothes and dressing her baby.

When her daughter was born, she felt as though all her dreams had been fulfilled. But at just 4 months, Meier was unable to hold up her head, roll over or sit up without assistance.

"We took her to hospital and she was diagnosed with cerebral palsy," Feng recalled.

However, the symptoms did not match the diagnosis. A local hospital in Chengdu gave another misdiagnosis that resulted in painful physiotherapy - including limb-stretching and electric shock treatment - for more than half a year.

Eventually, a report on a blood test from Beijing con-firmed Meier's condition as spinal muscular atrophy, which affects the part of the nervous system that controls voluntary muscle movement. It has wide variability in age of onset, symptoms and rate of progression.

Feng later learned that the earlier the age of onset, the greater the impact on motor function. Children such as Meier, who display symptoms at birth or in infancy, typically have the lowest level of functionality and rarely live to the age of 2.

Eventually, Meier was hospitalized as a result of respiratory failure, and her family took turns to watch her around the clock until she died.

To make matters worse, Feng's marriage ended at about the same time.

Facing the future

Feng found that she was not alone in her despair. Many messages arrived, asking for help: "My child has SMA too what can I do?"

China's estimated 30,000 to 50,000 SMA patients are a drop in the ocean of the country's 1.37 billion people, and the families felt too insignificant to be heard.

Ma Bin only learned he had the illness in 1993, when he was 20.

"I often stumbled when I ran at the age of 4; nobody knew what was wrong," he said. "Even in 2002, you could find nothing about the disease on Chinese internet search engines."

He began translating research and treatment files from English and put Chinese articles on his website, fsmachina.org. By 2011, the website was an online home to more than 400 parents of SMA patients.

Earlier this year, Ma and Feng established the Meier Advocacy and Support Center for SMA.

"At the beginning, I was thinking of raising funds for more respirators, because the most common cause of SMA deaths is respiratory failure. Most families cannot afford such a device, though," Feng said.

However, respirators are highly technical medical devices, not household appliances, so she and Ma decided to focus on making SMA better known and sharing day-to-day care techniques with the patients' parents.

There is no cure, but mas-sage and helping children to eat and sleep can extend their lifespan and improve their quality of life.

China's first SMA meeting was held in Beijing on Aug 6. It was attended by experts from home and abroad as well as many Chinese families with relatives suffering from SMA.

One of the MASC's missions is to make simple wishes come true for children with SMA-a trip to the beach 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. Butwe will provide a professional team to keep them safe," Feng said.

A choice for all

Feng is hailed as a "Super Mum" by parents of SMA patients for her dedication to helping them. They connect through Feng online or offline, and support each other, especially when a much-loved child loses their battle against the disease.

"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," Ma said.

To Feng's delight, a drug called Nusinersen, from the United States, is now being trialed as a treatment. It could be released in the market next year, according to its creator, Profess or Kathryn Swoboda of Massachusetts General Hospital.

However, Feng understands that a drug for a rare disease is not listed in China's critical illness insurance program because it is so expensive and only serves a small group of people.

Gene screening before marriage and in pregnancy is the best way of preventing SMA. The technology is already available in major hospitals and the test only requires 2 to 3 milliliters of blood. Feng's organization is cooperating with a dozen maternity and child healthcare hospitals across China to collect data about SMA gene carriers.

"If I had known how Meier would suffer, I would have aborted the pregnancy," Feng said, adding that she once met a couple from a remote mountainous region who thought it was just bad luck when their firstborn had SMA. Unaware they carried the SMA gene, they ended up with three sick children.

If no SMA gene is found in either member of a couple, their children are safe. If it's found in both, the defective gene can be edited out before an embryo is implanted.

Feng is now looking for-ward to the rest of her life and a pain-free future for children with SMA.

"I don't know if I will remarry or bear another child," she said. "I have a dream that, one day, our care center will be gone and people won't have to fear SMA, just as we no longer fear tuberculosis."

China Features is a feature department of Xinhua News Agency, which writes in-depth stories for overseas readers.