Kacpi is a 15-month-old bubbly, little boy from Warsaw. Kacpi was recently diagnosed with spinal muscular atrophy and we are racing against time. We have little time left to give him an innovative therapy costing $2M!
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Kacpi is a smiley little boy from Warsaw. His long-awaited arrival in this world couldn't make his parents - my friends - happier.
Initially, he was growing and developing fine, but his parents started noticing small changes. Kacpi was not able to learn to sit and walk as fast as other babies. Early December, at the age of 15 months Kacper was diagnosed with SMA type 2.
What’s SMA? Spinal Muscular Atrophy is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (atrophy). This may affect crawling and walking ability, arm, hand, head, and neck movement, breathing and swallowing.
Kacpi has been included in the Spinraza treatment program but we are aware that this does not give hope for a full recovery. It just slows down the inevitable.
There’s one drug available in the US, called Zolgensma. It has only been approved earlier this year and it costs $2,125,000 (9,000,00 PLN) - which makes it the most expensive drug in the world! We need to administer the drug before he turns 2 years old (September 2020) to provide him the chance of fighting the disease and living a normal life. The time is running out.
As someone who has no experience with running, I have decided to take on this challenge and I will be running a 10K in May for Kacpi to raise money for his treatment.
Kacpi is the happiest, cheekiest and bubbliest toddler I’ve seen. He always smiles when you enter the room and loves human interaction. We need to act fast so he can carry on being this amazing kid and enable him to have a carefree life that every kid deserves.
I will be raising funds from everyone who believes that Kacpi deserves a chance to develop properly. These funds will then transferred to the main crowdfunding page based in Poland
https://www.siepomaga.pl/kacpi-borutaWhat I’m trying to raise is here, is only a fraction of the overall amount that we need to save Kacpi so I’m hoping to exceed that amount.
I really believe that we can raise that money and help this little boy. Every dollar counts and we appreciate all of your help.
I am hoping that in a couple of years, he will be running along my side!
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