Ends at: 01 March 2022
I want to beg you to help us save our severely ill daughter Marianka. We’re helpless and will not manage without help of other people. Spinal Muscular Atrophy (SMA) is a genetic condition that causes muscle weakness and atrophy (when muscles get smaller). It affects child's ability to crawl, walk, sit up, and control head movements. SMA can damage the muscles used for breathing and swallowing. Without treatment SMA leads to death and only SMA gene therapy, currently the world’s most expensive drug, can stop its progression.
There can’t be anything more joyful than a fact of giving birth to a healthy child whom you desired to have. Marianka was born as such but shortly after we heard the bad news. Our happiness got destroyed then. It’s like a nightmare to learn that a severe condition will be devastating a little body of your beloved child...
We had noticed one day Marianka was less active. At that moment we thought it was normal, just the way she was. We did not know these were first symptoms of the serious disease.
Gradually symptoms started worsening and we would go to see a doctor. We learned Marianka was developing a genetic condition which left without treatment leads to death. I thought I would faint at that moment.
We come from Ukraine where there is no SMA treatment for children. We simply could not stay there and watch our child getting devastated by genetic disorder. We knew we must do everything possible. We took a difficult but rapid decision of coming to Poland. Our fight is going on.
In Poland Marianna got a drug which is reimbursed and helps stop the disease progres but unfortunately cannot save our daughter’s life. Only gene therapy can do it. Gene therapy in Poland is administered to children weighing up to 13.5 kg. Since Marianka weighs 13.3 kg already, we had to search for other possibilities abroad. We found a hospital in Barcelona where SMA gene treatment is administered to children weighing up to 21 kg. This is our hope.
SMA gene therapy price is exorbitant, it’s the most expensive drug in the world. We do not give up though, we’re fighting and going to win this battle. We need your help though. We cannot do anything without people wanting to help us save our daughter’s life.