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Little Pola against SMA! The time to receive gene therapy is running out!

Pola Matuszek

Little Pola against SMA! The time to receive gene therapy is running out!

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to 75365
Text 0199349
6,15 zł (including VAT)
Donate via text now
Fundraiser goal:

Gene therapy, physical therapy, rehabilitation equipment

Fundraiser organizer: Fundacja Siepomaga
Pola Matuszek, 8 months old
Białoboki, podkarpackie
Starts on: 13 April 2022
Ends on: 31 October 2022

Fundraiser description

Our little girl has SMA. Although we have already said those words a hundred times, we still cannot believe it. Pola was born on 5 January in a hospital in a sub-Carpathian voivodeship. Unfortunately, in that region, the carrier screening was unavailable at that time… 

Otherwise, we would have known about the disease immediately, and we could have started the treatment right away… Meanwhile, SMA has already taken its toll on our daughter’s tiny body. 

We have started a fight for gene therapy to stop the cruel disease! We are asking for your support from the bottom of our hearts! Please help little Pola! 

When Pola was born, nothing seemed to predict a dramatic turn of events that was about to happen. She received an Apgar score of 10, and she was perfectly healthy, our little miracle baby girl! At first, she was very lively, rapidly moving her little legs and arms. And then she suddenly stopped…

She became quiet and calm, and she barely cried. The only movement she made was following us with her eyes. I could not stop thinking about it. We went to the physical therapist, and the only diagnosis he made was hypotonia. The doctors tried to convince me that everything was fine and that children tend to develop at different paces. However, I refused to believe that since Pola stopped moving the way she had used to! 

We were searching for other specialists who could offer us the diagnosis. Another two physical therapists unanimously recommended a neurologist appointment after a minute-long examination. I started to be out of my depth. I felt that something wrong was happening and that something even worse was about to happen… 

We had to wait for a doctor’s consultation for several weeks. When it finally happened, the doctor immediately gave us a referral to the hospital. We heard the diagnosis—a suspicion of SMA. A couple of days ago, on 11 April, we received test results, which confirmed the worst. Our baby girl has spinal muscular atrophy! Terminal, progressive disease, that weakens and destroys the muscles! If untreated, it kills children before their second birthday…

When we heard the diagnosis, our world broke apart. Currently, we are at the beginning of our journey. Everything seems so sudden, unclear, and scary… We are still waiting for the reimbursed medication to be administered to Pola. Unfortunately, she’s already had the first symptoms of the disease despite the physical therapy we had started long before the diagnosis was made. She can barely move her arms, and her legs are still. She cannot even raise her head…

The doctors warned us that our time was running out. We found out about revolutionary gene therapy available in Poland that stops SMA! It is still not reimbursed, though, and it might never be. It costs 9 000 000 Polish zlotys… It is a price we need to pay for a normal life for Pola. 

We are scared of what is ahead of us. We are entering an unknown path, yet we know that it is the only right path for us. We will do everything in our power to help our daughter! That is why we are here to ask you for support from the bottom of our hearts. We know that Pola will not make it without you, and the disease will destroy her life. Please, do not let it happen… Give us hope…

Kamila and Marcin, Pola’s parents

Donate via text

to 75365
Text 0199349
6,15 zł (including VAT)
Donate via text now

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