Sacha was born on 13 September 2007. He was a beautiful baby, measuring 19.29 inches and weighing 6.39 pounds. There was nothing at the time to suggest that he was already suffering from a rare disease. In his first year, he developed like any other child of his age, started walking and went to day-nursery despite already suffering from bronchitis and breathing problems. Unfortunately, at the age of one, he was urgently admitted to hospital with an acute pulmonary disorder, following which he was diagnosed with kaposiform lymphangiomatosis.
He spent almost an entire year in the paediatric intensive care unit of the Cliniques universitaires Saint-Luc in Brussels. He received artificial respiration and was fed intravenously. After a very difficult year and many operations, Sacha finally came out of hospital, but had to undergo lots of treatment and an intensive rehabilitation programme, involving daily respiratory physiotherapy sessions, force-feeding, and intensive drug therapy which weakened his immune system. At the age of two, Sacha had to learn how to eat, walk, and speak again. He is also on a very strict diet, which is essential to combat his illness and maintain his growth, but it remains a daily challenge.
Surrounded by his family, and with the support of Noah, his fantastic younger brother, and the administration and teaching staff of his school, Sacha has been able to follow normal schooling at the Centre scolaire du Sacré-Cœur de Lindthout in Brussels. Seriously handicapped by his respiratory deficiency and with his intensive medical monitoring and frequent hospitalisations, he has struggled to keep up with children of his age.
Sacha will be 10 in September. Thanks to his strength of character, his willpower and courage, he is ending his fourth year of primary education. Although he has been able, up to quite recently, to do without oxygen during the day, he has been on a respirator every single night. Two weeks ago, however, this fragile balance was broken. Sacha is now dependent on his respirator day and night, and has had to stop school. After a lot of research, his doctors have now come to the conclusion that the only treatment that could help him is a surgical operation which cannot be carried out in Belgium, but only at the Children’s Hospital of Philadelphia, in the United States.
This expensive surgery, for which neither Belgian health insurance nor any other insurance scheme will pay, is his very last hope. A request for an exceptional intervention has nonetheless been submitted to INAMI (the Belgian National Sickness and Invalidity Insurance Institute), which might partially cover these costs through a special solidarity fund.
An amount of €430,000 has to be collected to pay for the medical expenses. Sacha is now very fragile and recourse to surgery is becoming urgent. It is important to act quickly otherwise his health will continue to deteriorate and he will no longer be able to undertake such a long journey.