A 2-Year-Old Boy Urgently Needs Funds for Bone Marrow Transplant
05/19/2014
In May 2013, Cai Zhixuan (XuanXuan) was diagnosed with HPS in Guangzhou, China. The condition was detected in the marrow cells during multiple blood tests and a bone marrow biopsy.
On July 15, 2013, XuanXuan was transferred to Memorial Hospital at Sun Yat-sen University of Guangzhou. After a series of treatments, XuanXuan’s condition improved and, as a result, he was able to start chemotherapy together with ciclosporin. HLH-2004 chemo-immunotherapy was also started after XuanXuan was transferred out from the pediatric intensive care unit. XuanXuan’s doctor at the time suggested a hematopoietic stem cell transplant (HSCT). However, this type of operation is highly technical and no local hospital could perform it.
On September 26, 2013, XuanXuan was transferred to Dao Pei Shanghai Hospital under the care of Doctor Liu Jinhong, who would be able to perform the bone marrow transplant. At the new hospital, XuanXuan continued with the HLH-2004 chemo-immunotherapy. Matching umbilical cord blood has become available. Once the necessary medical funds have been raised, XuanXuan will be able to undergo the surgery.
The surgery is budgeted at RMB 350,000 (about $56,910.00), and we still need to raise RMB 100,000 (about $16,260.00). In China, all operation related expenses need to be paid upfront before the surgery.
Here is a little background about XuanXuan and his family.
Xuanxuan’s grandmother died after suffering from paralysis for five years. Following that, his grandfather had heart bypass surgery. The family spent most of their money on the grandparents’ medical treatments. Now, with XuanXuan being sick, the family has used up everything they have and have borrowed from every relative and friend they know. The family used to rely on XuanXuan’s father’s single income when he worked at a factory. Both parents need to stay with XuanXuan in order to take care of him at the hospital.
Since XuanXuan started his chemotherapy, the family has already spent RMB 360,000(about
$58,536.00), which this poor family financed through both their meager savings and loans from family members and friends. The family can’t afford the surgery and the subsequent therapies.
Therefore, we sincerely hope that you, your family and your friends can extend your generosity and love to XuanXuan and his family by helping us raise the needed RMB 100,000 (about $16,260.00) for the surgery and additional funds to cover XuanXuan’s recovery treatments following the surgery. Together, we can give XuanXuan a new life.
Below are two links with media reports about XuanXuan:
Updated News:
Back in September/October 2014, with help from St Jude Children’s Research Hospital, Xuan Xuan was referred to Shanghai Children’s Medical Center (SCMC). At SCMC, they were able to perform a genetic test for Xuan Xuan to determine whether his HLH was caused by an inherited condition associated with abnormal function of the immune system. The results were received in November and no abnormal genes were discovered that that linked directly to HLH. This is such exciting news, as this suggests that Xuan Xuan’s illness may be what is called “secondary HLH”.
A volunteer, who works for a medical service company in Germany, was able to use her resources to have the University Children’s Hospital in Freiburg, one of the best hospitals in the world in treating HLH, to evaluate Xuan Xuan’s conditionx. Their specialists suggested that based on Xuan Xuan’s medical tests, it is possible that he has “secondary HLH” and a bone marrow transplant may not be necessary.
The good news didn’t last too long. Xuan Xuan’s current hospital and other hospitals in China do not have the expertise to treat this. They believe that a bone marrow transplant is the only alternative to save Xuan Xuan.
Given the risks related to transplants and the alternative treatment proposed by the hospital in Germany, Xuan Xuan’s parents wanted to get Xuan Xuan to Germany. The university hospital agreed to accept Xuan Xuan, and provided an estimated invoice – a six-week evaluation, tests and diagnosis for 50,000 Euros.
The invoice does not include treatments following the diagnosis, which cannot be provided at this time as the hospital has to further evaluate Xuan Xuan’s conditions. Xuan Xuan’s parents are currently trying to save as much as they can from donations and borrowing hoping they can get Xuan Xuan to a specialized hospital outside China, where he can get the appropriate and necessary treatments. Because the estimated budget exceeds the family’s affordable level, volunteers are urgently looking at other options, including Singapore and USA.
We want Xuan Xuan to get the right treatment with the lowest risks, but the estimated expenses are making it impossible. We want to ask those of you who have been following Xuan Xuan’s story to please help this child and his family. Because Xuan Xuan’s condition is getting worse, we want his treatment to begin as soon as possible. Please help us to save Xuan Xuan!