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March 10, 2013

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Celebrating the marrow of life

LIU Zhengchen often tells himself a story to lift his spirits: He is an angel of the lord and his mission is to help leukemia sufferers. Because he is immortal, God made him endure the suffering of leukemia patients so he never forgets the urgency of his mission.

Now, 13 years after he developed chronic granulocytic leukemia (CGL), 35-year-old Liu is in charge of one of the biggest organizations helping leukemia patients on the Chinese mainland, the New Sunshine Charity Foundation. It offers one of only two bone marrow donor programs on the mainland. It's considered one of China's best-run non-profits and its management and quality-control systems are promoted nationwide.

His cancer is in remission and the tall man looks quite healthy. He takes medication to control the disease and gets regular checkups.

Liu, who lives in Beijing, recently visited Shanghai to spend the Spring Festival holiday with his brother and spoke to Shanghai Daily.

Before he developed the disease, Liu's life was the envy of many people. He majored in mathematics at Peking University and then was recruited by the university's Guanghua School of Management for a master's degree in economics.

Liu still remember getting his leukemia diagnosis in December 2001.

CGL, also known as chronic myelogenous leukemia, is a cancer of immature white blood cells that are formed in the bone marrow. It accounts for 20 percent of all leukemia cases and 0.3 percent of all cancer cases. On the Chinese mainland, around five to seven out of 100,000 people develop leukemia , and a quarter of them are children.

It started when he noticed a tiny brown spot in the vision of his right eye. It was persistent and annoying and he saw a doctor.

The diagnosis was shocking. He was given around five years to live and was immediately hospitalized.

"The first night in the hospital I remained calm and reassured my now ex-girlfriend that it would be all right," Liu said. "But the next morning, while washing my face, I looked at myself in the mirror and suddenly realized that my life had changed, maybe forever."

While talking with the doctor about treatment, his parents whispered and looked away from him, which made him feel worse.

"I was sad to see them like this, and I couldn't help wondering why I would develop such a disease. I couldn't hold back the tears, I grabbed a towel, rushed to the balcony and cried."

Then Liu started to think about the rest of his life. At first he thought of building a marrow bank just to save himself since back then it was believed that a bone marrow (stem cell) transplant was the only way he could survive.

In early 2002, he held a family meeting to explain his idea. He wanted to start with something small and then expand to help more people. His family provided initial funding of 50,000 yuan (today around US$8,000).

On March 11, Liu's birthday, 108 people in Beijing volunteered for a bone marrow matching test organized by Liu and his schoolmates. He felt a door was opening for him.

Liu said he believed God's love saved him. Although he hasn't been baptized, he goes to church, created his own angel story and seeks comfort in the Bible.

"The Bible says we pray to God for help but if God doesn't work as we expect, we should not be discouraged because God has a plan for all of us. It gave me peace of mind and taught me a new lifestyle," he said.

In June 2002, he organized the Peking University Sunshine Volunteers Association to develop the donor program. Then the New Sunshine Marrow Donor Program was established. All the members were Liu's school mates. They drew support from other students, faculty and people outside the university.

In 2003, the China Marrow Donor Program informed him that they found a matching donor, but doctors said the new preferred treatment for his type of leukemia was no longer a transplant of marrow stem cells, but targeted therapy. Thus, his personal focus changed, but his mission to help others did not.

"From then on, operating a marrow bank had nothing to do with me anymore, but I still wanted to carry on," Liu said.

In 2005, a leukemia patient from east China's Jiangsu Province found a matching donor in Liu's marrow bank. The donor was a Peking University student. Surgical and related fees were covered by the Beijing Youth Development Foundation and the New Hope Group.

That success encouraged Liu and his fellows, but they encountered bureaucratic obstacles when they tried to register as a nonprofit organization.

He got a lucky break in 2008 when he was selected as a representative of torch bearers for the 2008 Beijing Olympics and went to Athens where the Olympic flame is kept. On the flight back to Beijing, Liu appealed for help to Liu Qi, the Party secretary of Beijing at the time.

"Then the problem was solved very soon," he said.

In 2009, the New Sunshine Charity Foundation organization was registered with the aim of operating the most honest, transparent, efficient and professional nongovernmental organization in China.

The organization has 25 full-time staff members, including a young cancer patient and some of Liu's former school mates.

In 2010, the organization joined Bone Marrow Donors Worldwide and later the World Marrow Donor Association.

In 2011, the organization decided to go beyond marrow transplant matching. They started to give financial support to needy leukemia patients and organize events for patient comfort and well-being. Over two years, the foundation has sponsored 730 patients, covering near 15.3 million yuan in medical expenses.

"We want to be sure that everything we do is patient-oriented," he said. For some leukemia patients, such as children or patients like Liu, drug therapy is better. The organization "does not push them to do the transplant just for our reputation," he said.

Meanwhile, the foundation is scrupulously honest with donors about details of the donation procedure, side effects and risks, mostly associated with anesthesia. Though it is generally safe, there is often discomfort that can be treated and will go away. Some matching bone marrow donors later backed out of the China Marrow Donor Program when they learned about the risks and discomfort. In some cases, their parents wouldn't allow them to donate.

That's not the donors' fault, Liu said, adding that they were not properly informed before they signed up.

"We want to be absolutely honest. When people register, we tell them all the possible risks and we need their families' signature for approval," he said.

At the beginning, after they started giving all the details of procedures - including bone pain, possible nausea and vomiting - registration dropped by around 75 percent, but Liu's goal is not high numbers. Donors are required to answer around 200 questions covering 300 types of conditions and ailments that disqualify them from donating bone marrow stem cells. These range from high blood pressure to acid reflux.

The organization's professionalism has been recognized. Last year the Beijing Civil Affairs Bureau requested the organization to set up China's first management and service quality control system for nonprofit organizations. Around 40 nonprofits on the mainland employ the system.

Liu now wants his New Sunshine Charity Foundation to expand nationally, develop international programs and help other nonprofits in China. He aims to set up a social responsibility department to guide and train young nonprofits.

"We have rich experience and have carried out management research, so we can do our best with our abilities," he said.

As for his personal life, he said he expects to get married in one or two years. After graduation, his ex-girlfriend went back to her hometown for work and eventually the long-distance relationship didn't work out. "But I believe an intimate relationship is vital," he said. "Mutual love, support and acceptance are very beautiful."




 

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