Daria's dramatic fight for life! Only the most expensive treatment in the world can save her!

Daria is already 11 months old, which means that we have dramatically little time to save her! On the day of birth, our daughter was sentenced to death. We couldn't allow it, we had to run away in search of a chance for her life! Today we know that Darunia can live, despite the incurable type 1 SMA disease. Gene therapy to fight with SMA is our hope. Unfortunately, this is the most expensive treatment in the world ... We beg for help, for a ray of hope that will allow us to believe in a miracle …

Our beloved daughter was born on August 15, 2019 in Nowopłock, Belarus. At the beginning there was a huge happiness, our dream daughter! We have an older, healthy son Andrzejek, there was no reason to think that Daria is sick. Deadly sick ... She was such a beautiful, smiling girl. How is it possible that there is such a monster in her body, such a terrible disease that wants to take her away from us?

Initial happiness was covered by fear. Daria was getting strangely weak, she had no strength to raise her head, she moved less and less. When she was 4.5 months old, she was diagnosed with a rare genetic disease - type 1 spinal muscular atrophy. It often kills children before the age of 2 without any treatment ... We got a verdict. The initial shock and despair was replaced by determination. We must do everything to save our child!

Type 1 SMA is a terrible disease that progresses very quickly, taking life gradually. Muscles atrophy, the child loses the ability to walk, stops sitting, stop moving her hands and feet. When it can only lie down, the disease takes away the ability to swallow and then breathe. The child dies ... Where Daria was born, such babies are doomed to death. There is no treatment option, parents can either go abroad in a dramatic search for help, or stay and watch their own child die. For us, there was only one choice …

We left our home, work, family, everything and came to Poland. We now live in Gdańsk, my husband works and has insurance. Here we started a new life, because here our little daughter has any chance of surviving ... Already in Poland Daria underwent surgery to insert a fistula for nutrition, because the disease has already attacked the esophagus muscles. We were able to buy a special medical equipment that helps draw mucus out of the lungs. Without that, our baby could suffocate, because the cough reflex disappears …

We do our best to manage the time and save our daughter. We've already received a cost estimate for gene therapy from the US - the only way to stop the progression of the disease. Unfortunately, this is the most expensive treatment in the world. We only have a few months to raise over PLN 9 million. Administration of the drug is only possible up to 2 years of age, but the sooner the better - the therapy stops the disease, but does not undo what it has already taken away. And every day it takes more and more …

On April 14, Daria took the first dose of medicine in Poland, which is already refunded. This gives us hope to keep my daughter in the best condition for the longest time. Unfortunately, the treatment available in Poland will not stop the disease, but will slow down its development. It is a therapy that must be used for the rest of your life and is supportive therapy. Gene therapy is the best chance for Daria to survive and for her future to be as good as possible, but we can't afford such fortune. I don't think anyone is, not alone …

That is why today we dared to ask you for help in saving our child. It is no one's fault that Daria was born where she was immediately condemned to death. We believe that every desperate parent in our place would do the same. He/She would leave everything if there was a spark of hope ... We are ready for every sacrifice for our daughter, we will do everything, but we can't do it alone …

We have catastrophically little time. Daria is already 11 months old ... For gene therapy to be as effective as possible, she must start as soon as possible. If we had such a fortune, even today, because every day is a matter of life ... We beg you with all our heart, help us ... Only thanks to the help of thousands of people our child has a chance to live ...

Galina and Aleksander, Daria's parents