Medical Fund for Needy Chinese Children

Dear Donors,

In this report, we wanted to share with you the story of Zhixuan, a boy who for two years fought through a life-threatening illness with great love and support from both his family and generous people who heard his story.

Zhixuan, born in Guangdong, China, was diagnosed with hemophagocytic lymphohistiocytosis (HLH) when he was one and a half years old, a life threatening genetic disease.  When first diagnosed in July 2013, his family was told he was in critical condition but he made it through.

Over the following months, his parents took him to visit all the major cities in China, including Guangdong, Beijing and Shanghai, in the hope of finding a hospital that would be able to treat him.  He was accepted by a hospital in Shanghai where he went through chemotherapy and received a bone marrow transplant in May 2014.  Unfortunately, the transplant was not successful.  While his family continued to raise money from borrowing and other means in hope of getting him a second transplant, his condition remained unstable, and he suffered from occasional seizures with lip cyanosis and oral automatisms.  

During this time, his parents rented an apartment near the hospital where Zhixuan spent most of his time.  His parents had to sanitize the apartment a couple times a day to make sure he could not catch any infections.  On nice days, they would take him out to parks but could allow only very limited contact with other people.

In February 2015, with great help from many kind and good hearted people, Zhixuan was accepted and travelled to the Children’s Hospital at Freiburg, Germany for diagnostic investigations.  The final diagnosis was that he had X-linked lymphoproliferative disease type 1, which was different from his previous diagnoses of HLH in China.  These two diseases share similar symptoms, but X-linked disease can be more severe and a stem cell transplant is required as part of the recommended treatment.

After returning back to China, Zhixuan started to show some improvement, being more active and having a good appetite.  After serious consideration, his parents decided to move back home and postpone the recommended stem cell transplant since the family had been away from home for nearly two years.  During all this time, Zhixuan’s twin sister lived with their grandparents. Since returning home, his father has started to work again in order to repay their debt and save up for Zhixuan’s future stem cell transplant.

A Life A Time helped the family finance the first bone marrow transplant in May 2014 and also set up a donation platform for Zhixuan on our website.  Since then, the outpouring of support from many goodhearted people have overwhelmed us.  Donations totaled $10,007 between January 2014 and May 2015.  Thanks to these donations, A Life A Time was able to support half of the required deposit for Zhixuan’s medical expenses in Germany in order for him to be accepted by the hospital.

In December 2015, we received an email from Zhixuan’s father.  In the email he thanked everyone who has contributed to his son’s care.  He also wanted to let us know that he wants the unused funds from donations to Zhixuan on the A Life A Time platform to be used to help other children based on donors’ wishes.  He ended his email with “We want the love we received for our child to continue to spread to other children who are in great need.”

We witnessed this child and his family’s journey over the last two years and wanted to share it with you.  We have also encountered so many wonderful and caring people who never gave up on him.  We would like to especially thank three volunteers: one who made Zhixuan’s story known in America, one who arranged the hospital stay and diagnosis in Germany (including helping to translate all of his medical records), and one who acted as their interpreter in Freiburg and also helped to find them temporary accommodations.

Zhixuan is not a single case, as we have seen so many families in China going through this type of predicament almost on a daily basis.  Our organization will continue to work to help every child that we can.  We want to thank you again for all of the support you have given to these children and we hope that you will continue to follow our efforts and be able to help even more children in need.

Sincerely,

A Life A Time Foundation