Vol­un­teer mom

Mother of boy with cere­bral palsy helps in­tro­duce ef­fec­tive treat­ment to oth­ers in sim­i­lar sit­u­a­tions across the bor­der

China Daily (Hong Kong) - - FRONT PAGE - Con­tact the writ­ers at zhouhuiy­ing@ chi­nadaily.com.cn By ZHOU HUIYING and TIAN XUEFEI in Harbin

Woman from Rus­sia co­or­di­nates care

On Mariia Kil­ian’s desk is an enor­mous stack of note­books la­beled with the names of dozens of Rus­sian chil­dren with cere­bral palsy.

She records the con­di­tion and treat­ment in­for­ma­tion about each of the chil­dren in the cor­re­spond­ing note­book and or­ga­nizes them so they are easy to re­fer to.

Kil­ian, 48, has been a vol­un­teer at the China Dis­abled Per­sons Fed­er­a­tion’s Cere­bral Palsy Re­ha­bil­i­ta­tion Cen­ter in Harbin, cap­i­tal of Hei­longjiang prov­ince, since ar­riv­ing from Nakhodka, Rus­sia, in 2010.

“Since 2009, our ef­fec­tive treat­ment meth­ods have at­tracted nearly 500 new pa­tients from Rus­sia,” said Liu Lu, the di­rec­tor of the cen­ter

Mariia’s 12-year-old son, Zakhar, is one of them.

He was di­ag­nosed with cere­bral palsy when he was 2 years old, and in the fol­low­ing three years, he was given treat­ment at hos­pi­tals in Moscow, which cost his fam­ily about $700,000. How­ever, the treat­ment had al­most no ef­fect.

“At that time, I tried my best to find in­for­ma­tion about ef­fec­tive treat­ments,” Kil­ian said.

“It gave me great hope when I found out on­line about the Cere­bral Palsy Re­ha­bil­i­ta­tion Cen­ter, so I de­cided to bring my son to Harbin.”

They ar­rived in the north­east­ern city in April 2010, and Zakhar’s brain func­tion be­gan to im­prove af­ter just a few months of treat­ment.

Kil­ian was able to re­lax more and be­gan pay­ing at­ten­tion to other Rus­sian fam­i­lies at the cen­ter.

Since she can speak some Man­darin, she be­gan to help her fel­low Rus­sians com­mu­ni­cate with the doc­tors in her spare time.

“As a mother whose child has the dis­ease, I can em­pathize with par­ents who are in the same sit­u­a­tion,” Kil­ian said. “So I hope I can do some­thing to help them.”

When a doc­tor at the cen­ter told Kil­ian that her son re­quired long-term re­ha­bil­i­ta­tion over a mat­ter of years, she made a de­ci­sion.

“My son likes Harbin very much and he has made sev­eral friends at the cen­ter, so I de­cided to stay in Harbin in­stead of reg­u­larly trav­el­ing be­tween the two coun­tries,” Kil­ian said.

She rented an apart­ment near the cen­ter and em­ployed an over­seas stu­dent from Rus­sia to help her look af­ter Zakhar.

“I know there are lots of chil­dren with cere­bral palsy in Rus­sia and I hope I can in­tro­duce in­for­ma­tion to their par­ents about the ef­fec­tive treat­ment at the cen­ter,” she said.

By co­in­ci­dence, Liu had the same idea.

“We con­structed a web­site in Rus­sian, on which peo­ple can find de­tailed in­for­ma­tion about the cen­ter,” Liu said.

“We hope to im­prove the con­di­tion of more pa­tients through qual­ity treat­ment at our cen­ter.”

Mariia was seen as an ideal can­di­date for the job of com­mu­ni­cat­ing with Rus­sian speak­ers.

The cen­ter pro­vided her with her own of­fice, and when she is not look­ing af­ter her son, she spends most of her time at the cen­ter.

Through the in­ter­net, she in­tro­duces the cen­ter to Rus­sians who want to learn more about it and sends in­vi­ta­tions to those who want to re­ceive treat­ment at the cen­ter.

Kil­ian be­came a trans­la­tor and guide for Rus­sians ar­riv­ing in Harbin for treat­ment at the cen­ter. She is now a pop­u­lar fig­ure with Chi­nese and Rus­sian chil­dren at the cen­ter.

For Lin Lin, a 7-year-old Chi­nese pa­tient, what he en­joys most is talk­ing with his Rus­sian “aunt”.

Ev­ery day, Kil­ian takes some time to chat with Lin and ac­com­pany him dur­ing his re­ha­bil­i­ta­tion train­ing.

“Lin Lin can now walk sev­eral steps in­de­pen­dently and it makes me feel happy when he wants to hug me,” Kil­ian said, smil­ing.

In or­der to keep the chil­dren in high spir­its, Mariia of­ten plays games with them and in­tro­duces tra­di­tional Western fes­ti­vals to them.

“At Easter, Kil­ian brought her hand-painted Easter eggs to the cen­ter, and the chil­dren loved them,” Liu said.

Ev­ery time Mariia goes back to Rus­sia for visa pur­poses, she al­ways buys or­tho­pe­dic shoes for the Chi­nese chil­dren at the cen­ter, as their par­ents are un­able to find them in China.

“It is not dif­fi­cult for me to go shop­ping, but it is im­por­tant for those chil­dren who need the shoes to help them stand up,” she said.

“Maybe I will live in Harbin for the rest of my life, de­spite feel­ing home­sick.

“The cen­ter has helped me enor­mously and given me great hope for my son’s re­ha­bil­i­ta­tion. I love the city and so does my son — I just want to give him the life he wants.”

PHOTOS BY LIU YANG / FOR CHINA DAILY

Mariia Kil­ian watches a Rus­sian cere­bral palsy pa­tient ex­er­cise at the Cere­bral Palsy Re­ha­bil­i­ta­tion Cen­ter in Harbin, cap­i­tal of the north­east­ern prov­ince of Hei­longjiang.

Kil­ian vis­its a Rus­sian mother and her child at the cen­ter.

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