The worst pain for a mother is to see her child dying. The worst moment is when a little baby is fighting for life in the intensive care. In that time, when a world collapses, mum has only one dream - for her child to live.
I thought the hardest part was finding out that Mary was ill with SMA. I was wrong. The worst was yet to come…
At the moment everything depends on money-my baby can be saved by the world’s most expensive medicine (ZOLGENSMA). It costs 8 mln polish zloty (2,1 mln USD). We are running out of time as this medicine is only for children up to 2 years old.
Spinal muscular atrophy (SMA) is the one of the most cruel diseases. It causes loss of important motor neurons in the spinal cord which are responsible for sending signals to muscles. Loss of these neurons leads to progressive muscle weakness and their gradual decrease in the mass and strength. It affects all the muscles in the body, not only the ones responsible for movement, but more importantly, the ones for swallowing, breathing and living….
One of the doctors from a hospital in Cracow said: “…it is good that Mary was born now, because there is a medicine (SPINRAZA)that slows down this disease and it is free in Poland... “-however he forgot to mention that once the symptoms occur, it is not that easy anymore.
From that time our lives have changed completely. Mary has been taking this medicine since the 8th of August 2019. It is being injected through the spinal cord and it prevents from further loss of the motor neurons.
We thought that from now on it will only get better. I even wanted to start helping Mary to sit as she is a very intelligent child. I wanted her to play, laugh and get to know the world around her.
One day my daughter barely breathed. Doctor immediately called ambulance and we went to the hospital. When we arrived she was taken to intensive care and I was left alone in the hall. After two hours, doctors finally let me in to see my baby. Doctor told me that the right lung dropped and was blocked by mucus. They told me to go home. It was the hardest thing to leave my sick baby alone among strange people.
Visits in the intensive care last only 4 hours a day. Going there every day I never knew what would happen. If she still will be there…..I cannot describe what mother feels walking into intensive care. I cried every time when I was going home without her….
Doctors tried two times to detach her from the breathing tubes, but she was unable to breathe on her own. Her muscles are too weak for her to be able to breathe, so doctors have decided to attach our daughter to respirator…..
Is it over? Should we only wait for this disease to kill our baby? No!!! There is still chance for Mary!!!! There is a completely new genetic therapy (ZOLGENSMA) available in the United States. This new therapy gives hope to all the children with SMA. Only one dose can save our daughter’s life. One infusion replaces faulty SMN1 gene and restores its ability to communicate with muscles again.
To get this miracle medicine we need 8 mln polish zloty! It is enormous amount of money and we have very little time. Mary will be 1 year old in January, and only children under 2 years old are eligible for this therapy. The faster we raise the necessary funds, the greater are chances for therapy to work.
If you have a healthy child, you have everything I can only dream about. If you do not have to look at your child’s suffering and you do not go to bed every day worrying about tomorrow, then you are the luckiest person in the world.
We are waiting for the final estimate of the medical treatment, but we need to have the money in time to save Mary’s life.
As a mother I beg you for this last chance to save my baby. I will go through anything to keep Mary alive. Please help us! I beg you not to leave us alone with this fight. We cannot do it without you.