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Hospitalized in Lyon for weeks for a rare disease of the immune system, Joris, 5, needs a bone marrow donation to survive. His parents are appealing to find a compatible donor. And if it were you ?
Networks and mailboxes are sometimes saturated with false appeals for donations, like so many spams. But solidarity today could really change the life of a 5-year-old child. Joris, a lively and caring little boy, suffers from aplastic anemia, an immune system disorder, a rare disease that requires a bone marrow transplant. However, no donor has proven to be compatible to date. The parents multiply the interventions in the media to find a donor before it is too late.
Joris’ bone marrow no longer works
The life of Joris and his family took a dramatic turn only a few weeks ago. During the night between March 21 and 22, little Joris woke up his parents. He has been pale and has red marks on his body for several days, but now he is bleeding from the nose, vomiting blood and developing bruises on his body. The child is quickly hospitalized. His blood tests reveal a lack of white and red blood cells, but also platelets. Transferred to the Institute of Pediatric Hematology and Oncology, Joris has remained hospitalized ever since. His disorder has a name: aplastic anemia, an immune system disorder.
“The bone marrow makes stem cells which in turn form white blood cells, red blood cells and platelets. Except that in Joris, his bone marrow no longer works. […] It’s not genetic. In fact, his bone marrow was working well, but one day he had to fight an illness and the antibodies finally turned against him. Now his own blood is made to fight against him.”indicates his mother in an intervention on France Blue.
An explanation that Joris himself has to digest. “We hide absolutely nothing from him. He was told that in his body he had ugly little soldiers who were fighting against himself rather than fighting against viruses” continues the mother.
No compatible donor known at this time
Since then, Joris has remained hospitalized in a sterile room, and his parents and those around him must take the greatest care not to risk infecting him. The child receives regular blood transfusions and has also started a treatment that will completely suppress his immune defenses to try to curb the disease, and see if the bone marrow starts to produce his blood cells again. The solution of a bone marrow transplant would be the most suitable, unfortunately no member of Joris’ family is 100% compatible. Same observation in national and international registers. This is why parents are active today in the media, on social networks to raise awareness of bone marrow donation and save their son.
“Without a transplant and without a transfusion, today, Joris will not be able to live” indicates his mother on France Bleu. The right person could be our neighbor” she insists.
Do you want to help Joris, or anyone else who needs a bone marrow transplant? The procedure for becoming a donor is poorly understood and less invasive than one might think. Thus, to register on the register of bone marrow donors, you must:
- To be in a good health ;
- Be between 18 and 35 years old;
- Go to the bone marrow donation site.
A saliva or blood test is then performed to assess compatibility. Registrants are only contacted if a patient is a match, and donations can only be made once. The sample is blood in 80% of cases. Otherwise, it is performed in the posterior bones of the pelvis, via a 48-hour hospitalization. Once the registration is registered, it is possible to donate until the age of 60.
Friends and fellow firefighters of both parents also opened a kitty of logistical support in order to “to lighten their daily lives in advance of fuel costs, accommodation costs, loss of salary, in order to have time to be alongside Joris during this tough ordeal.”