No parent will ever accept a death sentence which has been given to their child. A chance for Kacper is presently the most expensive drug in the world. For the parents, the life of their child is priceless. 8m zloty is needed to save Kacper's life! The precondition for the therapy is the child’s age - he cannot be older than 2 years old! If we fail to collect this enormous amount in time, his chance will be gone. We’re dreading to think about it!
Our second son was born in December last year. Initially, nothing indicated that our lives would change so tragically a few weeks later. Our son’s life that had just begun was suddenly on the brink of death….
Kacper appeared healthy, but something bothered us from the very beginning. He was our second child and we already knew what a newborn should be like. Days were passing by and Kacper was not moving, raising his head or turning like a healthy baby would. Over 3 months later, we had his written diagnosis in our hands and tears in our eyes, as his disease is one of the most cruel sentences a parent can receive…
Children with SMA don't wake their parents up at night as their cry can be barely heard. Their sucking reflex is barely felt by their mothers. They live, but their life is incredibly fragile, delicate, and what's worst, without a drug, it fades away leaving the child on the edge of death.
Type 1 Spinal muscular atrophy is a deadly disease, which until recently had no cure. Children diagnosed with SMA lose control over their body, their skeletal muscles become impaired and, in consequence, they suffer from respiratory arrest and death. Their only rescue is a breathing machine and mechanical ventilation. At this stage, there will be no going back for Kacper.
At the moment we relish every moment we spend together and are happy that we can hold him in our arms, hug and feed him. Every spoonful he swallows, every breath he takes and gentle movement he makes is our joy. Intensive rehabilitation will not save our son. The solution is strong therapy, which will nip the illness in the bud and allow us to sleep without waking up and checking if our baby is still breathing at night.
USD 2.1m - is the cost of innovative therapy in the US, which will allow our son to keep control of his arms and legs and to swallow and breathe independently. This enormous amount will make him sit, walk and live normally. So many children with this condition have not had a chance to live or to live without being attached to a breathing machine, but our son has still got a chance.
The new drug, approved in the US, is based on a modified virus, which supplies a correct copy of the defective gene to a patient’s body. Thanks to a one-time administration of the drug, the dying of muscles stops, and a baby has a chance of normal development and defeating the disease, which until now has been thought to be incurable.
There is another drug available for this terrible disease, which is also very expensive - Nusinersen. It needs to be administered every 4 months, throughout the whole lifetime, and the cost of one treatment is €90.000. Kacper is covered by this programme, which is going to be subsidised in Poland for the next 2 years. It is unknown, if the subsidy will continue. Living with a thought that one has got a child so ill is very difficult. Living with uncertainty that one day someone might decide that the treatment is too expensive to be subsidised is equally difficult. Therefore, we’ve made a decision to fight for the gene therapy.
The amount is colossal, and the collection is likely to be the biggest collection in Poland, but its cause is also the greatest - the life and health of our baby son. We believe that the treatment will be a break-through in the fight with this deadly disease with more children following Kacper, and that type 1 SMA will no longer mean a death sentence. No parent deserves to watch their child suffer and die. Living knowing that one gene has deprived your child from normal living and that he cannot be helped is terrifying. Knowing that, across the ocean, there is life-saving therapy is like a light in a tunnel.
We’re dreading to think that we won’t manage to collect the money in the months that are left, but we won’t give up fighting for our baby! We’ll only succeed if thousands of people decide that our son deserves a chance. Please be with us in these important months - months of our fight for Kacper! We’re asking for your help in fighting for a priceless gift of life for him…