Dear English-speaking friends, this is your money box
The money box was created on the initiative of the Organizer who is responsible for its content.
Kacper was born December 2018 and afer 3,5 month he was diagnosed with SMA1 (infantile type of spinal muscular atrophy). This lethal disease only recently became treatable and manageable- with the new treatment Kacper has not only a chance to live, but to live a normal life. However, the gene therapy that can cure Kacper is the most expensive treatment- one-dose therapy costs around 2,1 million USD and can only be applied up to second year of life. It is a huge amount of money, but result is beyond any price - Kacper would be able to sit , run and have a normal, happy childhood same way as other healthy kids. There is alternative treatment with medicine called Nusinersen, but it has to be applied throughout his life. Every 4 months he needs to receive one does of this drug that costs 90,000.00 EUR
The annual cost of the treatment is 270,00.00 EUR . Nusinersen is paid by the state since 2019 for the next 2 years. What will happen next? Nobody knows. We refuse to wait for a moment when someone will decide that this medicine is too expensive and won’t be refunded anymore. We decided to fight for gene therapy for our son. On behalf of our son, we would like to ask for your help in this difficult battle. A battle for life, where the only thing we can win is priceless gift of life.
All funds accumulated in the money box were transferred
directly to the target fundraiser:
Pledge 1.5% of tax
Pledge 1.5% of tax
Kacper was born December 2018 and afer 3,5 month he was diagnosed with SMA1 (infantile type of spinal muscular atrophy). This lethal disease only recently became treatable and manageable- with the new treatment Kacper has not only a chance to live, but to live a normal life. However, the gene therapy that can cure Kacper is the most expensive treatment- one-dose therapy costs around 2,1 million USD and can only be applied up to second year of life. It is a huge amount of money, but result is beyond any price - Kacper would be able to sit , run and have a normal, happy childhood same way as other healthy kids. There is alternative treatment with medicine called Nusinersen, but it has to be applied throughout his life. Every 4 months he needs to receive one does of this drug that costs 90,000.00 EUR
The annual cost of the treatment is 270,00.00 EUR . Nusinersen is paid by the state since 2019 for the next 2 years. What will happen next? Nobody knows. We refuse to wait for a moment when someone will decide that this medicine is too expensive and won’t be refunded anymore. We decided to fight for gene therapy for our son. On behalf of our son, we would like to ask for your help in this difficult battle. A battle for life, where the only thing we can win is priceless gift of life.
Donations
DKPLN 100