Over the last 5 years Maks's condition has worsened – he can't long go, he asks help to get out of bed or chairs, he hardly rides a bike. Last year i have again brought the son to Israel.
"We hoped that there was something new that can help Maks, and we weren't mistaken. Not so long ago there was medicine which is capable to suspend a course of disease. We have come back home and at once have begun to try to obtain this medicine, but it has turned out that it isn't registered our country".
Experts from hospital have confirmed important of this medicine: "Medicine is shown according to vital indications and replacement isn't subject. Translarna – the only medicine applied to therapy of patients is more senior than 5 years with the progressing muscular dystrophy of Dyushenn caused a nonsense mutation which analogs don't exist now. Efficiency and safety of therapy is convincingly shown by medicine at this disease in clinical tests abroad".
I made request in the Ministry of Health, the issue was long resolved, the commissions were convoked. But the final answer was such: "Today the financing source on medicine purchase isn't defined, the import license will be given in case of sponsorship from outside".
But we have not enough time if in the nearest future we don't begin to accept medicine, Maks will sit down in a wheelchair
Experts say that medicine Ataluren is appointed only to walking children. That is for Maks the last chance.
Medicine can be registered within a year. And then he will be written out such patient free of charge!
We live in New York, but I has no 10000$ for 1 packing of medicine — to Maks, according to medical documents, 4 packings a month are necessary. These are 40000$ on month or 120000$ on three. And it is impossible to save up such money — while i saves, the time will pass , and Maks don't have this time.
For Maks friends come, go together for a walk, children – run, and Maks can't. Tries to catch up with them, but stumbles.
Let's try to raise money for medicine for Maks! He should hold on only one year — there is a hope further that the state will begin to provide Maks with free medicine!