NUSINERSEN (SPINRAZA)
Skarbonka została założona z inicjatywy organizatora, który odpowiada za jej treść.
Bartek is 13 yo boy who weights 13.5 kg.
When asked about his illness he says "I know I will die" but at the same time he is trying to be taught - for his younger sister. To give her hope and comfort her in her fight against SME. Veronica is 9 yo and suffers from the same illness SMA (spinal muscular atrophy). Till recent there was no way of stopping SME progression.
There is a hope however - NUSINERSEN (SPINRAZA), a new drug that stops development of SMA (but does not cure it).
Unfortunately NUSINERSEN is a very expensive medicament - total cost for both kids is about $300.000. The parents simply cannot afford it and the government does not cover nor refund this therapy... :(
Everyone who can help, please do. Even smallest amount can be matter of life and death here.
100% collected funds will be transferred to foundation account.
Wszystkie środki zebrane na skarbonce trafiają
bezpośrednio na subkonto Podopiecznej:
Przekaż 1,5% podatku
Przekaż 1,5% podatku
Bartek is 13 yo boy who weights 13.5 kg.
When asked about his illness he says "I know I will die" but at the same time he is trying to be taught - for his younger sister. To give her hope and comfort her in her fight against SME. Veronica is 9 yo and suffers from the same illness SMA (spinal muscular atrophy). Till recent there was no way of stopping SME progression.
There is a hope however - NUSINERSEN (SPINRAZA), a new drug that stops development of SMA (but does not cure it).
Unfortunately NUSINERSEN is a very expensive medicament - total cost for both kids is about $300.000. The parents simply cannot afford it and the government does not cover nor refund this therapy... :(
Everyone who can help, please do. Even smallest amount can be matter of life and death here.
100% collected funds will be transferred to foundation account.
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