Filip is 13 years old. He has been fighting a serious fatal Niemann Pick type C disease since he was 6. The only hope for him is a drug called Zavesca….
About 20 children in Poland are ill with a very rare genetic disease- Niemann Pick C. Our 13-year-old son is one of them. NPC belongs to a group of metabolic disorders which gradually impair the ability to talk, walk and finally to breathe. Only very few children suffering from this disease live into their teens. The only hope for them is a therapy with a drug Zavesca. The cost of a monthly therapy is 13 000 USD. Unfortunately, it is not refunded by the National Health Fund….
Filip was diagnosed with the disease when he was 6. At the beginning it didn’t have any serious symptoms. However, it started to develop in the course of time. Filip attended school until the age of 9, he learned just like other healthy kids. Later, the problems started. Currently he not only doesn’t write and read but he also hardly speaks, walks and has problems with swallowing.
For two years he has been treated with Zavesca. The therapy has very good results, the disease seemed to have stopped, and we were happy to see that it wasn’t developing. Unfortunately, the National Health Fund refused to continue the financing of the therapy. We were helpless as we were forced to watch how our son’s condition significantly deteriorated day by day. All the time we were sending requests to various state institutions asking them to reintroduce funding of the treatment, however, with no success. We were left to our own devices so we started collecting money on our own. Thanks to many good people we were able to continue the therapy for some time. Unfortunately, we only have enough Zavesca to continue the therapy for two months and we are not able to collect such a big amount of money on our own. This is why this page has been created as we believe that there are plenty wonderful people in Poland who enjoy helping others. Filip’s life is the most important thing for us and we will do everything it takes to help him. Really, helping is what matters.
Stowarzyszenie dla Dzieci i Młodzieży SZANSA
Organizacja Pożytku Publicznego w Głogowie
ul. Perseusza 13 ; 67 – 200 Głogów
Fortis Bank Polska S.A. Głogów
IBAN : PL 28 1600 1462 0008 0303 3206 3040