Fundraiser finished
Adam Czopik - main photo

Adam wasn't supposed to be born - he needs your help!

Fundraiser goal: Surgeries at the European Paley Institute

Fundraiser organizer:
Adam Czopik, 11 years old
Jaworzno, śląskie
Rare genetic disorder - campomelic dysplasia
Starts on: 24 May 2023
Ends on: 22 May 2024
PLN 112,251(17.59%)
Donated by 1285 people

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Purpose of 1.5% of tax0047720 Adam

Fundraiser goal: Surgeries at the European Paley Institute

Fundraiser organizer:
Adam Czopik, 11 years old
Jaworzno, śląskie
Rare genetic disorder - campomelic dysplasia
Starts on: 24 May 2023
Ends on: 22 May 2024

Fundraiser result

Kochani!

Operacja w Paley Institute nie odbędzie się, kwota do zebrania jest ogromna, zaczęliśmy myśleć więc o innych dostępnych rozwiązaniach. Ponadto pojawiły się nowe okoliczności, w związku z czym postanowiliśmy zakończyć zbiórkę.

Po kilku kolejnych wizytach u innych ortopedów otrzymaliśmy sugestię, aby wstrzymać się z wydłużaniem nóg i obserwować wadę kręgosłupa. Wreszcie – co chyba najważniejsze, pojawiła się szansa, aby w perspektywie kilku lat otrzymać refundację na procedurę wydłużania nóg.

Potrzeby Adasia wciąż są duże, dlatego zebrane środki chcielibyśmy przeznaczyć na rehabilitację, która odbywa się kilka razy w tygodniu, zajęcia logopedyczne, pomagające mu nadrabiać braki wynikające z niedosłuchu, dalsze wizyty lekarskie, dojazdy i wszelkiego rodzaju wydatki okołomedyczne związane z leczeniem wady genetycznej naszego synka.

Dziękujemy za Wasze wsparcie! To dla nas naprawdę wiele znaczy! 💚

Rodzice

Fundraiser description

He is only ca. 3 feet tall, although he is almost nine. When he was in my womb, the doctors recommended having an abortion. Today we know that his life is a miracle! Although it is more challenging and requires more sacrifice, it is equally important. Adam needs help - otherwise, he will never grow up…

We have found out about his body abnormalities during prenatal examinations. The predictions included Down syndrome, Edwards syndrome, or even worse! To obtain a more thorough diagnosis, the doctors suggested amniocentesis, which we refused - I didn’t want to risk having a miscarriage. The ultrasound showed the presence of soft markers for Down syndrome - increased nuchal translucency and short femur. We ignored it, though, and waited for further test results. We thought it all must have been a mistake… 

We consulted a different doctor, one of the best in the country. When she saw Adam’s legs on the ultrasound, she turned pale and was speechless. When we asked her if Adam would walk at all, she replied he would die…

We were shocked. The diagnosis was osteogenesis imperfecta type III, a terminal disease. The doctors suggested abortion. His legs were so fractured that he would probably die before being born. We only had one thing in mind - did he feel pain?… 

It turns out he did… It was so sad! After all, a baby is supposed to feel great in the mother's womb! We were given a week to decide whether to let him suffer or end my pregnancy.  Any choice we would have made would be dramatic, and we didn’t feel like making that decision, so we made peace with whatever happened. We left it to fate and God.  And then, everything started to work out… 

Adam was born on October 7, and despite a poor medical prognosis, he survived! Although the doctors made a diagnosis that would stick with him for the rest of his life, we proved them wrong. When we were told not to hug or rehabilitate him and carry him on a wooden plank, we followed our instincts instead - and we didn’t let the fear of his disease take over. 

We felt that our son’s diagnosis was wrong and unfair. He could not have had a brittle bone disease! Further genetic tests proved us right. 

While searching for the best orthopedic specialists, we found Dr. Paley, who made the correct diagnosis. As it turned out, Adam’s legs weren’t fractured but bent. 

It was campomelic dysplasia, a rare genetic condition, and if detected in pregnancy, a woman is being advised an abortion. However, if a baby is born, it usually dies from respiratory failure or requires putting on a tracheostomy tube. 

The survival rate is only 7%. In our son's case, the gene mutation is unusual and undetectable, though.

On the plus side, he doesn’t require the tube and experiences no breathing difficulties. Unfortunately, he has many other orthopedic issues associated with the spine and legs. He needs another surgery, rehabilitation, and consultations with specialists. 

Our son has already undergone many surgeries that made it possible for him to walk! He proves his bravery every day. His journey to recovery hasn't ended, though… 

Another stage of treatment includes limb lengthening. Adam has a short stature which causes his low self-esteem. He is not accepted… It makes us heartbroken. Our love and support for him cannot replace the friendships… Kids can be cruel, though. 

The only solution for him is limb lengthening of the tibia and femur at the European Paley Institute in Warsaw. The procedure is not covered by health insurance and costs ca. 600,000 zlotys. Please, help our son! If there is a chance for a better future for him, we must take it. Thank you for any donations from the bottom of our hearts!  

Adam’s parents 

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    Trzymam za Ciebie kciuki, Adasiu! 😍

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    Jestem z wami w modlitwie

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