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Let's help Zuzia!

Zuzanna Sulecka
Fundraiser finished
Fundraiser goal:

Gene therapy

Fundraiser organizer: Fundacja Siepomaga
Zuzanna Sulecka, 2 years old
Smogorzewo , wielkopolskie
Starts on: 01 July 2021
Ends on: 15 September 2022

Fundraiser result


Dziś, 3 listopada 2022 roku, stało się to, o co wspólnie walczyliśmy – Zuzia otrzymała terapię genową! Życiodajny lek powstrzymujący SMA popłynął do żyłek Zuzi dziś o godzinie 11:15. Nasza wojowniczka dzielnie zniosła podanie, czuje się bardzo dobrze, a uśmiech nie schodzi z jej buźki!

Zuzanna Sulecka

Radość miesza się z niedowierzaniem i niesamowitą ulgą – dla rodziców, babć, dla wszystkich bliskich Zuzi, ale też nieznajomych, którzy poświęcili swój czas, energię i środki, by dać tej dziewczynce szansę na zatrzymanie SMA!

Dziękujemy Ci za wszystkie miesiące walki, za wiarę, że się uda – od początku do końca. Ten cud jest możliwy także dzięki Tobie!

Fundraiser description

When Zuzia was born, it never crossed our minds that something was wrong. Then there were 7 months of happiness and pneumonia, which started an avalanche of dramatic events ... Finally, the diagnosis was made - SMA. Our baby girl has spinal muscular atrophy! There is a drug that can stop a brutal disease - its price, however, is unimaginable for an ordinary person ...

We are starting the fight for a miracle and we wholeheartedly ask for help for Zuzanka! We must do everything before the disease takes away more from her ... Zuzia was born on February 19, 2020 in a hospital in Gostyń. Back then, I thought we were very lucky and had a healthy baby. Zuzia developed correctly until she was 7 months old. Then she fell ill with pneumonia ... I remember it today, I was so afraid for her! The little one couldn't catch her breath, her chest was rising and falling dramatically. I thought he was going to suffocate! I tremble at the very thought that it would happen again ... Zuzanna Sulecka We spent two weeks in the hospital, a very difficult time ... There was a pandemic, I couldn't leave my room. Fortunately, I was still breastfeeding and at least I could be with Zuzia. Many parents did not have this opportunity ...

Zuzanna Sulecka

After leaving the hospital, Zuzia weakened a lot, she lost weight, there was a regression - she lost most of her skills! Everyone said I had to give her time, it's because of the disease. My grandmother kept saying that it was not normal that there was something wrong with Zuzia. Doctors, however, continued to reassure him that he still had time and would begin to develop later. She did not start ... The little daughter did not raise her head by herself, she did not have the strength to sit down herself. Eventually I went to the doctor for a referral for rehabilitation. We started it on April 1 and during the first visit the physiotherapist noticed that Zuzia was flaccid. The visits to specialists began and finally the genetic test confirmed my worst fears ...

I remember that I cried a lot. I could not imagine that my beloved, little daughter received such a sentence! A judgment against which there is no appeal ... On June 11 this year, we learned that Zuzia has SMA - spinal muscular atrophy. The disease causes them to die one by one, and the child loses all skills, including breathing! I didn't know how to live, how to think and function…

Zuzanna Sulecka

Zuzia was so sick, it couldn't be true! Unfortunately, the research results left no illusions. Zuzia's dad and I are carriers of a faulty gene, which we did not know. Our baby had a 25 percent chance of being born sick. Lottery. Zuzia lost ... The fight has begun. On June 22, Zuzia received the first infusion of the reimbursed drug, which is to delay the progress of the disease. There was pain and crying, I cried with her ... In the hospital, we met the parents of a girl with SMA, who are collecting money for gene therapy. It was from them that we learned about the most expensive medicine in the world, which can stop the progression of a terrible disease. We decided that we would also fight for this chance for our Zuzia.

We know that we have a long and difficult road ahead, we would not forgive ourselves, but if we had not tried. Therefore, we ask everyone who reads our appeal - help our daughter! We believe that we will succeed and that Zuzia will also get her chance. However, we don't have much time ... Zuzia currently weighs 8.5 kilograms. Gene therapy can only be given up to 13.5 kilograms! However, the later, the greater the risk, so we must hurry. It will only succeed with your help. Please

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