What's it like to live with a rare blood disease? Four stories about being ill, about fighting, caring, hoping and getting better. About how something so serious can also lead to something beautiful.
Jordi is an ordinary 13-year-old boy. He goes to school, plays chess and practices Kung Fu. What of his future? Jordi responds, "Something with computers, I think that's very interesting." He's even been offered a job by a computer company that spotted him when he was doing an IT course. In any case, he wants to make computer animations of the picture books his mother drew: "She did that to explain what was happening to me when I was little.”
Jordi's first years of life weren't entirely normal. He was three when diagnosed with a serious blood disease called beta thalassemia major. He was very tired, looked yellow and got progressively sicker. Jordi's prospects were not good as the disease only worsens with time. It was the beginning of a difficult road: in and out of hospital for blood transfusions and having to endure pain due to the insertion of the IV drip. It also meant he was not able to attend school normally.
The only real solution was a stem cell transplant, which Jordi received when he was five years old. His little brother, Dean, was the donor. Jordi had to be in isolation for seven weeks. When he returned home, it took some time before his immune system was back to normal. He received specially prepared food and had to go to the hospital regularly for check-ups. It took a long time before he was better.
Nowadays, things are completely different. Jordi's immune response is very good. When his brothers are still floored by the flu, he is already up and running and in good health.
Fortunately, Jordi doesn't remember much about the transplant: "I only have vague memories which I can't really place. Flashes that go through my head: for example, that I slept in my mother's bed the night before my operation; that I was in a tent in the hospital; and that my grandparents came to visit me and I kept falling asleep."
Younger brother Dean, as small as he was, remembers the bell he gave Jordi to ring in case he needed anything. That was later, when he had returned home. He also recalls a night when Jordi had been sad because he couldn't go to school. Dean had comforted him. At the time, Jordi was allowed to go to the supermarket where his father worked as a manager, wearing a proper shop coat. Dean told Jordi he was doing well and tried to raise his spirits by asking him: how many 11-year-olds have a job?
Jordi doesn't really want to think about when he was sick and says, "I don't notice anything about that period in my life anymore and can do everything now." He also plays sports, although sometimes his legs hurt and his lungs don't work as well as the other children's. And because he has a problem with his arm and can't write well, he uses a computer in the classroom. But Jordi tries not to let it get to him. He would rather do fun things, like programming or teaching his youngest brother how to play chess.
Now that Jordi has been cured, thanks to his transplant, he visits the hospital once a year for a check-up. He goes with his brother, Roan, who has the same disease. Roan also received a stem cell transplant and this time their youngest brother, Aidan, was the donor. The check-up is always an exciting moment and Jordi gets a bit anxious. But, after, his life goes on as normal, just like that of any other boy.
Jordi has now been cured. However, there are people who don't have regular treatment options for their disease or condition. myTomorrows provides insight into medicines in development across the world. Contact our medical team if you have any questions about treatments in development either in your own country or abroad.
This article was made possible by Fenghuang Martial Arts and the Almere Chess Club in Almere, the Netherlands.
myTomorrows helps patients who have exhausted their regular treatment options. There may be a suitable treatment option that is in development. Read more and make an appointment with our medical team.
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