Let's save Borys's life! His mother is begging for help...
ene therapy - treatment for spinal muscular atrophy. The only chance to save Borys' life!
Ends at: 27 September 2019
"Dzisiaj rano o 8.20 przeszedłem do innego lepszego świata, jest tutaj cudownie, mogę ruszać się, jak tylko zapragnę, uśmiechać i oddychać pełnią Ducha. Nikt tutaj już nie cierpi i nikomu nie jest smutno. Moje małe ciałko można było wyściskać bez żadnych kabelków i rur. Tutaj już niczego mi nie potrzeba. Aha, 27 września 8 lat temu moja Mamusia urodziła swoje pierwsze dziecko, moją siostrę Dagunię. Narodziny i śmierć zatacza koło. Jesteśmy tu tylko na chwilę. DO ZOBACZENIA, BĘDĘ NA WAS TAM CZEKAŁ"
Rodzinie składamy najszczersze wyrazy współczucia i łączymy się z nimi w bólu. Wszyscy mieliśmy nadzieję na inne zakończenie tej historii...
Dziękujemy wszystkim, którzy zechcieli pomóc Boryskowi. Dobro, raz puszczone w świat, nigdy się nie zatrzyma... Środki, niewykorzystane na leczenie Boryska, zostały decyzją Zarządu Siepomaga przekazane na ratowanie życia piątki innych podopiecznych, wskazanych przez mamę chłopczyka. Wierzymy, że ten dzielny maluch czuwa nad nimi z góry, a okazane wsparcie doda im sił do dalszej walki.
How much is human life worth? Life of a tiny child who should have the whole future ahead of him? It should be priceless. You can't put a price tag on it. However, the value of Borys' life was set at 8 million zloty. That's the price for his gaze, words, smiles, each day when Borys breathes, grows, is with his mum and dad. Each day he lives...
We're asking for your help, because Borys is terminally ill - but he can be saved! The desperate parents face a huge obstacle: the cost of his treatment. This is the only way for Borys to stay with us. His heart can no longer withstand the load associated with respiratory failure and without effective treatment he will die!
Look at this baby, read ... And don't be indifferent, because it means only one thing -a life sentence.
Borys' mother - Olga: For 5 months my life has been revolving around the Intensive Care Unit. Here is my world, because Borys, my son, lives here. At 11 am I cross the threshold of the Poznań hospital. I leave at 7pm. My son's eyes change when he sees me. Only those were not taken away by the illness. I see a spark of life in them. I also see a scream for help. Borys will not reach out his hands, he will not smile ... He can't. He has SMA - spinal muscular atrophy. The worst and rarest type. Deadly.
Borys is probably the only child in the world with such an advanced form of SMA. Children like him usually die a few days to several months after birth.
He was born on April 2. There was no first scream or loud crying ... Just a small sob. There was no hug, because my boy was limp, in a critical state ... He was connected to a respirator that is breathing for him to this day.
It's hard to describe these first moments. Instead of enjoying my son's birth, I was dying of fear. I didn't know what was wrong with him, if he could be helped, if he would survive... There was shock, despair, uncertainty ... In the ward I saw neurologically ill children without diagnosis. Days went by and things got worse with them ...
Fortunately, Borys' diagnosis came quickly, although it's difficult to talk about a big relief in this case. SMA - spinal muscular atrophy. Very rare genetic disease. It causes the death of neurons responsible for muscle use ... The patient stops moving, speaking, swallowing, breathing ... In the worst type - the one that Borys has - a child does not even learn these things. He doesn't lift his head, doesn't roll over, has suckling problems ...
Borys has limp arm and leg muscles. He can't move ... He also has weak lung muscles. Borys takes light breaths in, but these breaths are too weak to be sufficient for proper functioning. The respirator provides the rest of the necessary air.
Borys cried only once, very quietly after he was born. I was never able to hear him again. His voice died in his throat, it was taken away by the illness, tracheotomy tube and respirator. The eyes are, however, a mirror into the soul ... I see them glow when I come visit. I see when he suffers, when he hurts, when he is sad ... Then tears fall from his eyes. This mute cry is worse than a scream. It is also a kind of a shout - for rescue. Hence my plea, my mother's plea - because Borys' life can be saved!
Until recently, SMA was an incurable disease, inevitably leading to death. Today, thanks to the development of medicine, it's no longer the case! In the US, doctors have managed to invent a drug that stops the disease from progressing! In SMA, muscle weakness is caused by protein deficiency in nerve cells. It's the result of a genetic mutation. An American drug changes the DNA sequence and causes the body to produce the necessary protein! Thanks to this, Borys' muscles will stop dying ... He will gradually regain strength, begin to breathe by himself and move ... He will live!
However, time is running out - the treatment is only for children who are less than 2 years old. There's only a few up to several months left to save his life. The drug is already approved for use overseas, but to save a Polish child, we must pay for it. $ 2.1 million - that's the cost of treatment called gene therapy. 8 million zloty. It's so much money that I didn't even dare ask for it. I was persuaded by good people, doctors and friends ... And a stranger who wrote to me on Instagram. Mother of a sick girl from Portugal. Over there, the money was raised in 2 weeks. They did it! Will we...?
The drug will be imported from the USA to Poznań, where it will be given to Borys ... If it works, Borys will be the first such child in Poland.
know that maybe I am asking for a miracle, but this fundraiser is not only for Borys' treatment - it is to save his life. We have no other choice. I am waiting for Borys to come back home, his siblings are waiting for him too ... If you decide that my son deserves a chance, if you tell others about him, if there are thousands of us ... then he will live. I don't want anything else and I'm not asking for anything else.