NUSINERSEN (SPINRAZA)

Hary Zauer
organizator skarbonki

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.

Darowizny trafiają bezpośrednio na zbiórkę charytatywną:
Hary Zauer
Weronika i Bartek Dul, 13 lat
Ratujmy ich, dopóki jeszcze jest nadzieja!
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