DON’T LET MATEUSZ’S FIRST BIRTHDAY BE HIS LAST!

Mateuszek recently had his first birthday. When he was born nobody suspected that in a couple of months the young parents will hear diagnosis that would destroy their little-big happiness. Concerns began to emerge when days, weeks and months passed and babies of Mateusz’s age cheerfully crawled or already started walking, whereas he wasn’t even able to turn on the other side by himself. Anxiety was rising and the numerous visits at doctors’ offices began. “The child is lazy”, “There’s nothing wrong with him”, “His development has its own pace, you have to wait” – they heard after doctors barely glanced at their son who was getting weaker and weaker. Finally, they visited a private neurological office, where the doctor immediately ordered baby’s examination with the worst suspicion – spinal muscular atrophy.

The time of waiting for the results was dragging painfully and everyone hoped that this all will turn out to be just a bad dream and Mateuszek’s parents would be able to breathe a sigh of relief. Sadly, it wasn’t the case. The day has come and the test results sounded like a death sentence for their little son:

„(…)The genetic test result, along with the clinical picture and the results of additional examination, allows to determine spinal muscular atrophy…”

Spinal Muscular Atrophy (SMA) is a rare genetic neuromuscular disorder characterised by the loss of motor neurons that are responsible for muscle mobility. This is accompanied by progressive muscle wasting and mobility impairment. It does not, however, affect sensation or touch and the emotional and cognitive development is normal. Although older patients usually experience milder symptoms of this disease (if you can call that loss of mobility and the use of wheelchair till the end of your life), in case of infants and small children it often leads to death…

Mateusz’s test results have left no illusions. Last year FDA approved the only possible cure for SMA – Nusinersen. It is not available in Poland apart from the clinical program that covers a very small group of patients. Mateusz didn’t get that chance. Doctors were powerless and parents have heard that if they don’t find another way they will be forced to see their only child die.

The desperate struggle with time began and they started looking for a way to save the life of a little child, a child who has not even had a chance to get to know the world or make his first step…

Fortunately, the hope came from abroad, where Mateusz’s parents got the chance to have their son treated! It’s not too late. Mateuszek can live!

Alas, the treatment involves huge cost that exceeds parents’ financial capacity, but they don’t lose their hope. They believe that they won’t have to see how the life of their one-year-old son slowly fades away.

Please, help us save Mateuszek! Don’t let his life fade away!

You can help Mateusz by making payment on the account:

Fundacja Pomocy Dzieciom i Osobom Chorym “Kawałek Nieba”

PL31109028350000000121731374

swift code: WBKPPLPP

Bank Zachodni WBK

Title: “1079 Help for Mateusz”

or by DOTPAY: