Mikolaj is 5 years old and lives in Poland. His mom says, “The scariest thing of all is the degenerative nature of this condition … and even this kind of SUPERHERO can’t cope with that. So, our best wish is a dream cure to stop the clock and give him the most amazing chance for a new, better life, without regression and maybe with progress in his development!”
A Message from Mikolaj’s Family:
Like all superhero stories, it should start in an appropriate way … Miki was born on a snowy, snowy December night in Poland, middle Europe. As all superheroes during infancy, he didn’t betray any traits of being an outstanding little boy. He was just random and one day about 5 or 6 months old his random parents noticed that he didn’t look at people like other children: he didn’t stare, he didn’t move forward either. His development just stopped. They started visiting doctors, the best ones, so many neurologists, geneticists, ophthalmologists and all kinds of other specialists … no one knows what was wrong. They all just kept saying “a mystery” or “a puzzle” over and over. There was no other choice for this mysterious boy – these days he knew, he was a SUPERHERO.
Miki started to train his muscles, his mind, his eyes and his character and all SUPERPOWERS. Then after 2 years and a lot of lab tests, an answer came: KIF1A Associated Neurological Disorder – a really outstanding diagnosis. Then he was able to meet a lot of similar superheroes from all over the world. Day by day he is getting stronger and doesn’t give up, chasing his chance for normal development. He discovered true talents like swimming and playing music. He is a little heart breaker too. He loves watching trains and biking. This disease limits him in multiple ways, but he doesn’t give up – he is a WARRIOR! A SUPERHERO! A smile is his best superpower! He can’t walk independently, but he crawls everywhere. His sight is so poor, but he can watch cartoons for hours. He can’t speak a lot, but he understands everything.
The scariest thing of all is the degenerative nature of this condition … and even this kind of SUPERHERO can’t cope with that. So, our best wish is a dream cure to stop the clock and give him the most amazing chance for a new, better life, without regression and maybe with progress in his development! To watch more of his adventures see: www.fb.com/czerniakmiki
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