STOP SMA! Let's save Olek's life❗️
Donation protected
You hear SMA - spinal muscular atrophy and you see a child who is getting weaker every day. Dying neurons make it lose strength, it cannot develop and function normally. Finally, the moment comes that the child cannot swallow food on his own, and every breath turns out to be a superhuman effort. Your heart breaks in pain because the baby is only a few months old and is sent by bad fate to a deadly fight for his own life. This child's name is Olek and he is our son, and the greatest chance is given by gene therapy for over over EUR 2 millions ... Help!
Olek was born in the 37th week of pregnancy, this is our second child. He received 10 points on the Apgar scale. During the first months of his life he was developing properly, there was no indication that something would be wrong. We were happy parents, who were looking at every progress of our long-awaited happiness for which we have been waiting for 3 years. However, when our beloved son turned 8 months old, the first signals appeared - something was going wrong.
Olek stopped lifting his head while lying on his stomach, he never sat down alone, and when seated he swayed and fell. He also began to lose his ability to sit, and his body became more and more flaccid, his legs refused to obey, they did not want to cooperate with the rest of the body, he never stood up or walked on them. These symptoms caused the yellow warning light to come on.
After consultations, which we hurried to check what was going on, we heard that everything was all right, that we were exaggerating, that Oleczek was lazy, that he still had time and that every child was growing at a different time. However, it did not calm us down and at some point we asked directly about genetic tests for SMA. Unfortunately, we heard a negative answer ...
We started private rehabilitation of Oleczek on our own, blindly searching for the reason for this state of affairs, and we found out from physiotherapists that the child may have some terrible neuromuscular disease and it is not known whether its development will be going properly. Finally, Covid19 appeared in the world, which also paralyzed our fight for our son's health. It wasn't until he began to weaken that we agreed to see the neurologist again and received a referral. After 3 weeks we got the result, and basically the verdict ... SMA type 2.
To say that the diagnosis has knocked us down is nothing to say. The next few days were cut out of our biography, we had to cool off after this huge blow. Then we started to work and fight for the son's future. At that time, we also found out about cosmically expensive genetic therapy that virtually all children with spinal muscular atrophy in Poland collect. Seeing photos of babies who have already accepted this therapy, we have made the only possible decision. We must try it.
Innovative gene therapy appeared only a year ago in the USA and works differently than the drug available in Poland, directly affecting the damaged SMN1 gene and helping to provide the right amount of protein. Therapy also has another important advantage, because it consists of a single administration, which is enough for a lifetime, and you don't have to give it to your child every few weeks as a painful injection. It is said to be the most expensive drug in the world because it costs over $ 2 million. Fortunately, for several weeks you can also give it in Lublin, without having to go to the USA.
We must be in a hurry, because this therapy can be used only on children under 2 years of age or until the toddler does not exceed 21 kg. Oleczek will soon be 1.5 years old, and he is still not able to get up from the floor, crawl or walk. The muscles fade and other skills disappear, the child is very flabby and overflows through our hands. As a result of muscle atrophy, the chest deforms into a bell shape and collapses. It may become respiratory failure at any moment, it is an inclined plane, we are heading towards respiratory support with a respirator. We need to stop it and for that we need your help.
The amount that appears on the fundraiser is huge and we are aware of how much work is ahead of us and how many good people we have to ask for support, because we can't do it humanly. Be with us. Be a great Army of Oleczek, with whom we will win this unequal fight for health ...
Parents
Olek was born in the 37th week of pregnancy, this is our second child. He received 10 points on the Apgar scale. During the first months of his life he was developing properly, there was no indication that something would be wrong. We were happy parents, who were looking at every progress of our long-awaited happiness for which we have been waiting for 3 years. However, when our beloved son turned 8 months old, the first signals appeared - something was going wrong.
Olek stopped lifting his head while lying on his stomach, he never sat down alone, and when seated he swayed and fell. He also began to lose his ability to sit, and his body became more and more flaccid, his legs refused to obey, they did not want to cooperate with the rest of the body, he never stood up or walked on them. These symptoms caused the yellow warning light to come on.
After consultations, which we hurried to check what was going on, we heard that everything was all right, that we were exaggerating, that Oleczek was lazy, that he still had time and that every child was growing at a different time. However, it did not calm us down and at some point we asked directly about genetic tests for SMA. Unfortunately, we heard a negative answer ...
We started private rehabilitation of Oleczek on our own, blindly searching for the reason for this state of affairs, and we found out from physiotherapists that the child may have some terrible neuromuscular disease and it is not known whether its development will be going properly. Finally, Covid19 appeared in the world, which also paralyzed our fight for our son's health. It wasn't until he began to weaken that we agreed to see the neurologist again and received a referral. After 3 weeks we got the result, and basically the verdict ... SMA type 2.
To say that the diagnosis has knocked us down is nothing to say. The next few days were cut out of our biography, we had to cool off after this huge blow. Then we started to work and fight for the son's future. At that time, we also found out about cosmically expensive genetic therapy that virtually all children with spinal muscular atrophy in Poland collect. Seeing photos of babies who have already accepted this therapy, we have made the only possible decision. We must try it.
Innovative gene therapy appeared only a year ago in the USA and works differently than the drug available in Poland, directly affecting the damaged SMN1 gene and helping to provide the right amount of protein. Therapy also has another important advantage, because it consists of a single administration, which is enough for a lifetime, and you don't have to give it to your child every few weeks as a painful injection. It is said to be the most expensive drug in the world because it costs over $ 2 million. Fortunately, for several weeks you can also give it in Lublin, without having to go to the USA.
We must be in a hurry, because this therapy can be used only on children under 2 years of age or until the toddler does not exceed 21 kg. Oleczek will soon be 1.5 years old, and he is still not able to get up from the floor, crawl or walk. The muscles fade and other skills disappear, the child is very flabby and overflows through our hands. As a result of muscle atrophy, the chest deforms into a bell shape and collapses. It may become respiratory failure at any moment, it is an inclined plane, we are heading towards respiratory support with a respirator. We need to stop it and for that we need your help.
The amount that appears on the fundraiser is huge and we are aware of how much work is ahead of us and how many good people we have to ask for support, because we can't do it humanly. Be with us. Be a great Army of Oleczek, with whom we will win this unequal fight for health ...
Parents
Organizer and beneficiary
Michał Lewandowski
Organizer
County Limerick
Piotr Kawalec
Beneficiary