‘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.

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

Adecade 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 con­firmed 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 mas­sage 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. But we 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, Pro­fes­sor Kathryn Swo­boda of Mas­sachusettsGen­eral 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 for­ward 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.”

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.” Feng Ji­amei, a founder of the Meier Ad­vo­cacy and Sup­port Cen­ter for SMA


Chil­dren with spinal mus­cu­lar at­ro­phy visit a park in Bei­jing with the help of vol­un­teers from the Meier Ad­vo­cacy and Sup­port Cen­ter for SMA.

Zhang Xu / For China Daily

Feng Ji­amei (left) and Ma Bin ad­dress the audience at China's first SMA con­fer­ence on Aug 6 in Bei­jing.

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