NUSINERSEN (SPINRAZA)
The money box was created on the initiative of the Organizer who is responsible for its content.
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.
All funds accumulated in the money box are transferred
directly to the Beneficiary's account:
Pledge 1.5% of tax
Pledge 1.5% of tax
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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