Being a parent of a terminally ill child is living a life which existence is very unheard of and of which nobody wants to belong to. Fathers and mothers standing in hospital corridors for hours, listening to the doctors that a better tomorrow will never be, trying to seek their children's rescue wherever possible. The silence of the hospital, which is sometimes interrupted by the crying of their child lying motionless, and the panic of fear that the doctor will say in a moment that there is very little time. The view of suffering is the most difficult part to bear because it belongs to the child who you love the most in the world. Tears of sadness, pain, and helplessness, this has become a part of everyday life.
A few months after the birth of Mikolaj, we were unaware that we would soon become part of the world that I described. We had no idea that we would go knocking from one door of the doctor's office to the other in order to save our own child. Then came the life changing news when the doctor confirmed the weakening and disappearing of the muscles. Later on, it all proved to have become reality, we saw ourselves how the weakening of the hands and feet of our baby were taking place. Like the movements that were previously performed suddenly stopped. When Mikolaj was 5 months old we heard from the doctor a diagnosis which is known to be equivalent to a slow and unstoppable death: SMA (Spinal Muscular Atrophy) - three letters that signify a slow disappearance of muscle after muscle. Something in us died. We did not believe this was happening. The most painful part was the fact that we were helpless. We did not want our baby to die.
We were told that Mikolaj would not live to see his 2nd birthday, that the only thing we could wait for was the worst. Mikolaj’ muscles will slowly start to disappear until respiratory failure occurs, and his heart will eventually stop. It was said that every single day would bring us closer to death. It was said that from now until the very end we will lead and accompany our child towards his death, as every day is closer and closer of being his last.
Waking up in the morning not knowing what the day will bring is extremely painful. In the evening, inability to sleep because it’s impossible to go to sleep peacefully while thinking about what can happen any minute. Could it get any worse? Soon after we began to seek rescue, that meant even if we have to go to the other end of the world, we would go there. In the meantime the disease began to progress. Mikolaj stopped pulling out his hands as he was no longer able to lift them up. He no longer raised his head. When he was sitting, his head was falling to the sides by itself. The respiratory muscles began to weaken - at night it is mandatory to have the support of the respirator. Our baby slowly started to get weaker - like a balloon from which someone suddenly started to let go of the air. There were questions. His older sister could not understand why her little brother was still and couldn’t move. How do you explain this to a child?
Mikolaj was weak and we had to be stronger. If we were crying, it would be far from our children so they couldn’t see how difficult our tragedy was, so that they wouldn’t have to feel that piercing pain. During several hours of rehabilitation, which are needed in order to help Nicholas, we cried together with him and helped him get through them. With all our strength we were hopeful that the disease will somehow be stopped. Having great hope that our baby will live succeeded! We found the treatment in Italy. Nusinersen therapy is our chance to stop our son's illness. In Poland, an ongoing 2 year study with 20 children diagnosed with case 1of the disease is being currently carried out. Unfortunately, Mikolaj did not qualify for them ... In order to get the drug we have to go to Italy. Someone finally told us that our child does not have to die, that his life can be saved. Each additional injection strengthens our Warrior. We see that he breathes better again, that he raises his head and hands up. We can see with our own eyes that our tragedy is yet to be reversed.
We do not know if we will ever see Nicholas take his first steps, but we know that we can at least allow him to "aim for the goal" through the electric wheelchair on which he will do his "first steps." Without it, he won’t be able to do anything ... The cost of living with a child with an SMA is outweighed today. Daily rehabilitation, equipment and trips to Italy cost us so much that purchasing an electric wheelchair at this time is impossible. Ordinary wheelchair is also out of the question, because Nicholas’ hands are too weak to turn the wheels on his own. We believe that with your help, we will be able to give him what he has not had all his life- the ability to move. Please help us fight for the health and life of our son...