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Wang Yi’ou: Our love is strong

Wang Yi’ou, our heroine, is a member of a group of people who are referred to by a lovely name, the china dolls. But there is nothing lovely about the condition they are in. They suffer from a rare disorder called Osteogenesis Imperfect (OI), or brittle bone disease, which means their bones break as easily as china. Wang Yi’ou, founder and director of China’s very first and only center for the OI patients, the China-Dolls Center for Rare Disorders, cherishes a big dream, which is to help bring attention to this vulnerable group of people and create for them a social environment that treats them as equals with respect.

A strong china doll

It is not difficult to find information on Wang Yi’ou on the Chinese Internet. Sporting a doll face and big doe eyes, Wang looks like the kind of girl you would fall in love instantly,an impression that proved right when I finally met her at a social gathering for female entrepreneurs in Beijing.

Standing at a mere 1.3 meters, Wang could easily get lost in a crowd. And no matter how much you’ve heard about the disorder beforehand, it does not really prepare you for the shock when you meet a person who suffers from the condition because you see how much it affects their looks. Yet after a few minutes with Wang and listening to her talk, you would find yourself completely won over by her.

The strong and beautiful china doll. Photo: Courtesy of Wang Yi'ou

Wang flew in from Kunming to attend the event of which she is the main speaker. A five-hour delay at the airport tired her, but did not dampen her spirit at all. In her sweet voice which tinkles like bells, she recounted her stories of how she started China Dolls Center for Rare Disorders to a roomful of eager ears.

Like many people with successful stories, Wang is low-key. Her words are simple but are nonetheless touching because of the sincerity. She started off by explaining what is the disorder and how rare it is. She said she was lucky because her condition was mild. “So don’t worry, you can give me hugs and I won’t break!” It takes both strength and intelligence to make jokes like this. Instantly people were drawn to her. Both respect and affection grows.

Wang first started a bbs website called “Glass City” when she was still a law student at Beijing Jiaotong University. She had simple purpose on her mind, which was to spread the word that the disorder could be treated which she only just learnt herself at the time. Within a couple of months, she had over three hundred subscribers. Lively discussions on the daily difficulties they have to deal with painted a vivid picture of the lives of people affected by OI, which was deeply disturbing for Wang. “I didn’t realize that OI could affect people so much,” Wang said. “Many of these people live in complete isolation from the outside world because of it.”

After graduation, Wang worked for a year at a legal aid center helping the disadvantaged. She soon realized that the need of the OI community is far greater than the people she was helping with but there was no organization to support them. The realization prompted her to quit her job. Together with a friend who also suffers from OI, they started a help center in 2008.

“We had no money. We borrowed other people’s offices and carried our own laptops there to work,” Wang described their early days with a quiet smile. “We bought a PAS (personal access system which is a kind of wireless phone that used to be very popular in China) and used it as our hotline. So basically we carried a phone with us 24 hours a day just in case someone called for help.”

In such difficult times, Wang and her friend and a team of volunteers found ingenious ways to carry out their work. “We are very different from many other NGOs who started out by accepting funds or projects from foundations. We started by engaging the public.” They gathered paintings done by children with OI and put them on exhibition at art galleries that agreed to give them the space for free. The paintings were sold at 500 yuan apiece and all the money went to helping the OI patients with their treatments and surgery.

From May to December 2008, they raised around 20,000 yuan. In the second year, the number grew nine-fold to 200,000. In the third year, the year they finally successfully registered as an NGO, they managed to raise a million RMB.

Once they had an official status, an office to work from, and a team (there are now 14 people working full-time, five of whom are OI patients), China-Dolls grew rapidly. Donations from enterprises and foundations came in. They designed several lines of products under the brand “china love”, including notebooks, stuffed animals, Tshirts, and canvas bags, which they sell on their Taobao e-store to raise money and awareness. In 2013, they raised a total of over 6 million yuan.

Every design of the China-Dolls product features its English logo: Love is still strong. Photo: taobao.com

Not being needed is the ultimate goal

A lot of the money they raised is spent on medical treatment and rehabilitation programs to help the OI patients who otherwise can’t afford them. “Children and young people are our priority beneficiaries. We want to help them to get to a better condition so that they could go to school and turn their lives around,” Wang said. The program that serves the children is aptly named “Project Ironman”. And they too, provide scholarships and small monthly subsidies to the children in need.

This important work that China-Dolls is doing should in fact be the government’s responsibility. But the reality is many rare diseases like OI simply do not get the attention and are not included in the medical insurance in China. “A lot of the attention are given to diseases such as leukemia, and congenital heart disease,” Wang said regrettably. “Which sadly made our work all the more necessary.”

Due to the fact that people with other rare diseases and disabilities suffer from the same problems with people with OI, China Dolls serves all these groups in their programs such as “development and empowerment” where they provide artistic trainings and workshop as well as organizing trips to help these people rebuild their confidence and learn to enjoy life despite their conditions.

Every two years, China-dolls organize national conference for people with OI. The third conference, which finished on August 5 featured a variety of forums, salons, and courses that targeted specific problems the OI communities face, such as vocational training and parenthood consel. Government officials were also invited to participate, along with medical experts, big donors and representatives from fellow NGOs.

“We would love to see new policies that address the problems the OI community faces and legislations that safeguard our rights and provide legal protection,” Wang said. “Every year we submit our suggestions to the two sessions and we seek every opportunity to voice our hopes in the media. It is not easy to see policy changes. But we believe if we continue trying, it will eventually happen.”

A promotional picture of the China-Dolls Center for Rare Disorders. Wang likes to showcase the smiles of her fellow china dolls though a more effective way of fundraising is probably by focusing on the misery and misfortunes of those in need. “We don't want people to donate out of sympathy. We want to bring people along who believes in the same thing as we do, which is to enjoy life despite its hardships.” Photo: Weibo.com

A barrage of questions were directed to her throughout the evening, which kept the poor girl busy who didn’t even get to eat a few bites having come straight from the airport. “Oh it’s OK. I’m fine,” she smiled graciously as ever when people apologized for not giving her time to eat.

At one point of the evening, she was telling stories of the people they have helped with and the subject matter involved an unborn fetus suffering from broken bones in the mother’s womb. I couldn’t help but shuddered and winced at the horrible picture. Wang, who was sitting next to me, quietly put her hand on my knees. “Are you all right?” She asked.

This simple gesture touched me. This is the girl who at six years old had a badly-healed bone snapped broken again by the doctors’ bare hands and she had to wear braces like that of Forrest Gump’s to correct the crook in her right leg throughout her teenage years. Having gone through all these pains, she could have laughed at my wimpy reaction as some people did, but she was genuinely concerned. It was exactly this big heart that drives her to the immensely meaningful and charitable work with the China-Dolls.

“The ultimate hope of us doing this is that one day we won’t be needed,” Wang said. “I hope by then all people who suffers from rare disorders and disabilities could be given the same treatment and respect as a normal person. That is when I could say mission accomplished.”

Photo: Courtesy of Wang Yi'ou


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