Mateusz is dying since he came into the world. SMA is a monster that every day, piece by piece, takes his life. It is killing slowly - muscle by muscle. It forces his parents to look at it all, when they are desperately trying to find help. Doctors in Poland throw their hands up. There was no cure until recently. Now there is a drug called Nusinersen, but it is not available in Poland outside the clinical program which includes a very small group of patients. Alas Mateusz hasn't been given the chance of treatment in his country...
We were told that our son's muscles would slowly disappear until respiratory failure and the heart would finally stop. We heard that every year will bring us closer to the loss of our child, that we will not be able to do anything because this illness is a death sentence and the inescapable one. We will only be able to see how our child passes away. When Mateusz was born, no one suspected that in a few months we would hear that he is dying. At the time that he should have started walking, he just lay limp in his bed. He has not kicked his legs, he has not tried to reach for us with his hands. Days passed, weeks, then months. Mateusz was unable to turn himself to the other side. He lay motionless like a rag doll."The child is lazy", "Nothing is wrong with him", "His development has its own pace, please wait". Mateusz was getting weaker and weaker, the doctors were calming us and we were going out of our minds. We felt it's bad.
From the private neurological office we have already come out with the worst suspicion. The doctor ordered a test confirming Spinal Muscular Atrophy. At home, with shaking hands, we typed the name of the disease in the search engine. Each website has ripped us out of delusions, on each website we have read how much this illness can destroy the body. Everywhere was one worst word: death. Each of us hoped that this would turn out to be false, a bad dream. That the test result would exclude the suspicion of SMA. That it would be something else, something that can be treated... Hope has disappeared faster than it appeared.
"(…)The genetic test result, along with the clinical picture and the results of additional examination, allows to determine Spinal Muscular Atrophy…" - these words have been underlined on the document. By the day we received the results, we have learned almost everything about SMA. We knew then that we would have to face this disease and our one-year-old child who hasn't got to know life yet would be doomed to suffering.
SMA leads to the death of neurons in the spinal cord responsible for muscle mobility, resulting in mobility impairment and progressive muscle wasting. All this in full consciousness, because SMA does not touch the mind, it causes fully conscious suffering. Our child will feel as if his body is dying and we will be looking at his torment and will be doing anything to make him bear as little pain as possible. Desperate struggle with time and finding a way to save the life of a small child - that;s how our life looks life from the day of diagnosis. We look at the tears of our son and we don't know how to help him.
Since recently there is a cure against SMA - Nusinersen which helps to stop the progression of the disease. Unfortunately in Poland it is not available for our child. We heard that if we don't find another way to get the drug abroad, we will look at how our baby disappears. There is hope - treatment in Belgium. However, the rescue costs a lot of money which we don't have. Apart from the drug, we need rehabilitation and appropriate equipment so that our baby will not lie still at home.
We believe we won't have to look at how the life of our one-year-old son is slowly fading. We believe that together with the people of great hearts we'll be able to stop the death. We are begging you to help us save our son's life...