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Please, save our only child! Igorek fights against SMA and time... Help!

Igor Kudrawskij
Fundraiser finished
Fundraiser goal:

Gene therapy in fight against SMA

Fundraiser organizer: Fundacja Siepomaga
Igor Kudrawskij, 2 years old
Radom, mazowieckie
SMA: Spinal muscular atrophy type 1
Starts on: 02 December 2020
Ends on: 03 January 2022

Fundraiser result

Kochany wujku, droga ciociu naszego synka,

mamy dla Was cudowne wieści… 20 października Igor otrzymał terapię genową! Okazało się, że razem ze środkami zbieranymi na Ukrainie mamy wystarczającą ilość pieniędzy, by zapłacić za lek. Załatwianie formalności trwało w ekspresowym tempie, bo wiedzieliśmy, że każdy dzień działa na naszą niekorzyść…

Teraz oficjalnie możemy ogłosić, że Igorek dołączył do grona dzieci, które dostały terapię genową. Patrzyliśmy, jak dostaje lek i płakaliśmy ze szczęścia. Niemożliwe stało się możliwe dzięki Tobie…

Igor Kudrawskij

Synek dochodzi do siebie. Teraz przed nim rehabilitacja, a przed nami zakup sprzętu, który ma ułatwić życie Igorkowi… Mamy nadzieję, że wkrótce zachwyci nas nowymi umiejętnościami, możliwymi dzięki terapii genowej. Całą nadwyżkę, która została nam po opłaceniu leku, będziemy mogli przeznaczyć na dalsze leczenie i rehabilitację synka.

Wiemy, że Igorek będzie walczył z chorobą do końca życia, ale dzięki Wam otrzymał najnowocześniejsze leczenie i największą szansę na sprawność i samodzielność. Jesteśmy Wam za to niezmiernie wdzięczni. Bez Was nigdy by się to nie udało.

Dziękujemy Wam za wszystko - za wsparcie, za każde udostępnienie naszej zbiórki, każdą osobę, której opowiedzieliście o Igorku, za czas i za zaangażowanie. Dzięki Wam niemożliwe stało się faktem i nie jesteśmy sami.


Igor Kudrawskij

Fundraiser description

Please, help us! Our little boy is very ill... Igor's muscles are slowly dying... SMA - the diagnosis have turned out life upside down, bringing us fear, uncertainty and pain.  We still cannot believe this tragedy has happened to our family... We are crying every day... Through our tears, we fight. We will not give up until this unimaginable amount of money is collected for our baby's treatment. We are begging for your help!

Pre-diagnosis, we believed till the very last minute that our worst nightmares will not come true. That this horrible gut feeling will turn out to be a distant memory soon. Unfortunately, we couldn't be further from the truth. We found out that our that our darling boy is suffering from a horrible life-threatening disease. A disease that gave us countless sleepless nights and turned our perfect lives into a nightmare.

For 8 beautuful months we were blessed with a healthy baby. He brought us so much joy when he was born! He became the centre of our world and we couldn't wait to share the world with him. Every smile, every movement, every wave of his hands... We were not expecting to soon be watching him lose all his strength and not even be able to move his little fingers!

The first sign that made us really worried was his tiny hands constantly shaking. But even though we were worried, we were not prepared for the worst, I don't think any parent could be. Especially since Igor so far was developing beautiful and growing up well. Even after visiting a neurologist, we didn realise just how bad our situation was. We were hoping it's all just temporary - mild muscular disorder which can be easily fixed with physiotherapy. Unfortunately, as our baby grew, so did our fear for his future, his health, his future...

We managed to get our diagnosis after a few months - but once we heard it, it felt like our world has been shattered into a million pieces. SMA - Spinal Muscular Atrophy. This horrible illness has taken our joy away, by replacing it with constant fear. It almost feels like we cannot be happy again until our son is safe again...

SMA is a monster. A monster that makes our precious little boy weaker and weaker every day. It takes away Igor's ability to walk, to stand up, to talk and even to breathe. In our nightmares, we see our baby struggle for his breath, and there's literally nothing we can do to help him. 

We feel hopeless...We stopped being just parents, we became parents of a terminally ill child. Our whole life revolves around fighting for our son's health and life.  Every day we look at Igor and we are so scared, because we worry that the disease has taken something new from him and we will not be able to help him ...

There is a treatment available that could help our fatally sick son. 
SMA Gene therapy provides a copy of the gene that our son does not have (his body does not produce the protein responsible for the work of muscles). 

This is where we need your help to even have a chance to stop the disease!  
My son will get a chance to move his hands, feet, talk, eat ... To live normally.  Unfortunately, it is not without reason that this drug is called the most expensive drug in the world ... A single administration costs over PLN 9 million!  Even if we were to put ourselves into a massive debt, sell everything we own, it would still not be enough ...

So we fight not only against the disease, but also with time... Igor must take the drug as soon as possible - all the changes happenning in in his body could be irreversible!  And every day it gets worse... That is why we are begging all people with kind hearts for help...

Please help us to fight for a better life for our son..

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