For 8 months, we have been the parents of a terminally ill child. Your help is needed urgently, because the most important thing for Niko is time! SMA 1 - spinal muscular atrophy, is a terrible disease that takes away strength, hope and life with each day ... Our son's muscles deteriorate instead of developing. Until recently, children like our Niko were doomed to slowly pass away in agony. Today, modern medicine offers a chance – a terribly expensive therapy can stop this ominous disease.
We face the greatest challenge a parent can face. We have to beat the clock, to gather an unimaginable amount of money to give our child a chance. It’s now or never…
We are at the very beginning of this journey. For 8 months, happiness has been intertwined with fear and despair. Our life belongs to our greatest love - Niko, who could have been a healthy and strong child.
The 41st week of a perfect pregnancy ended with a caesarean birth. A lovely, strong boy was born. It never crossed my mind that the first hours after giving birth would take such a dramatic turn.
Niko got an Apgar score of 7, due to the decreased muscle tone, but such situations happen. Doctors told me to wait, since everything should’ve gone back to normal after a day. Our son's muscles didn’t get stronger, the doctors started looking for the cause, and we started getting scared. At that time, the hospital launched the first Coronavirus-related procedures. Due to this, I was alone in the hospital room, and outside the hospital, Niko’s dad was waiting nervously, unable to even take his son into his arms.
Three days after giving birth, I heard the 3 letters that defined the rest of our life. SMA - spinal muscular atrophy – the doctors had suspected this terrible disease, and the diagnosis was confirmed. The first procedures were implemented, we were asked for permission to collect blood for tests, - for me, it seemed that it was all a terrible dream.
I am a nurse - I have spent many years in hospital wards and they have always given me a sense of security. Now, in shock, it seemed to me that it was a place in a nightmare that would end soon, and I would go home with my son.
We found a fantastic doctor who decided not to discharge us from the hospital yet. If the initial diagnosis was right, she wanted to keep an eye on our son. For babies with SMA 1, breathing and swallowing are of utmost importance. If he were to choke, the consequences would be fatal.
Niko was brave, he breathed and swallowed properly, and although he did not have the strength to drink breast milk, he was great with the bottle. We waited for the doctors’ next decisions, while the Children's Clinical Hospital across the street was already preparing a place for us in the neurology ward.
On April 2, the results of the tests arrived, confirming our worst fears. The diagnosis has become a fact – SMA type 1, the most severe type. On that day, we entered the world of parents who have to put aside their suffering so as not to waste a single day. Because of this disease, neurons and their connections constantly die in a child's body. Our son was getting weaker, instead of gaining strength, so we couldn’t waste time. Our hands became his hands, our legs became his legs, and our great love, his greatest chance!
In the neurological clinic, we were qualified for treatment with a reimbursed drug that slows down but does not stop the disease. We had to absorb hundreds of difficult information to be able to take care of our child and not hurt him. The standard layette that waited for Niko at home was discarded. We knew that our home and our life would now change dramatically. Daily exercises, rehabilitation, electrostimulation of the face, nightly ventilation using a respirator. The hours of vigilance intertwined with hard and arduous work – all of this to stop time, to not watch our son's life draining out.
There is no one perfect way to deal with this disease and we will always be one step behind it, but if we combine all the methods available in the world, if we give our son all our enthusiasm and our whole heart, one day we will win!
The chance for successful treatment is at our fingertips. Gene therapy, consisting of a one-time insertion of a healthy version of the damaged gene that caused the disease. This one injection, so-called the most expensive medicine in the world, is a miracle for our family. Until now, the only way to get the drug was in the United States, however, recently it can be administered in Poland - in Lublin!
We are standing with our little son in front of a seemingly unbreakable wall. The price of the medicine is astronomical, but that doesn't matter to us at the moment. We have no choice, like every parent, we love our child and we will fight for him. Without you, we will never reach the stars, we will not break the barrier of over 9 million PLN, but we can see how many children have already succeeded and how real this opportunity is.
We need you, your great hearts - so as to give our son the most beautiful gift - a chance to live without the burden of this terrible disease. We need your hearts that will open to Niko, your eyes that will look with hope just like ours. We need your shares and strong wills, which will break every barrier.
We are racing against two of the most dangerous opponents - a disease that has already deprived so many children of the future, and time, that takes away our son's health forever.
We believe that we are not alone in this race, and one, fine day we will all see Niko win with SMA 1.
Thank you, though no words can ever express our gratitude ...