How did it all start?
I was born prematurely by a month on November 20, 2001, because my mom was sick and it was starting to show up on me, so the doctors decided to give birth prematurely. Everything seemed fine, and I made my mom happy. I was a good, happy child, and that’s what I’ve been left with so far. The first problems began to manifest around 1.5 years ago, when I started walking. I was walking badly, and I was falling a lot when someone grabbed my hand or got caught somewhere, so it blew up right away, and we had to see a doctor. When we were there three times a month, the doctors started to suspect mom of abuse, so they sent us to genetics, where I was eventually diagnosed with Ehlers- Danlos ( loose joints and ligaments). None of this stopped me from being an active child, whether I had a cast or a brace, but I was still out there, and it didn’t matter if I was cycling, in-line skating or on my own, keeping me calm was almost as impossible as it is now.
All of this changed in 2012, and when the orthopedician strengthened my knees and straightened my ankles with plaster, he did it twice, but not at three and they didn’t break me up, why no one knows anymore.
The prognosis was that I’d be in a wheelchair when I was 5 years old, but it was being delayed by the sport. Despite frequent casts, dislocate and injuries, nothing could stop me from playing sports, and it didn’t work out even when I was in a wheelchair.
The fact that I stayed in a wheelchair for more than a few hours annoyed me most in sports and learning to be as independent as possible. Luckily, I had people around me who took me for who I am and didn’t look at the wheelchair, stayed with me. And those who left, damn it, you’ll meet real friends at the bottom.
I am currently studying high school and i am engaged in sports Florbal, parahokej and i am still tempted to try basketball and golf. I have a parahokej just for fun because I have weak hands for it and I enjoy Florbal more , which we played with friends (walkers) in elementary school.
In 2019 came another ugly ”fall” just days after his 18th birthday. I’ve had trouble swallowing and talking for a long time, but everyone attributed it to impaired spasticism and said it would be fixed with the baklofen pump that had been planned until then. It got to the fact that I couldn’t eat, so they kept me in the hospital, where I started choking the next day after lunch, despite the oxygen. The doctor didn’t like me very much, so she called for Aro to come and see me, so it turned out that they were taking me to their place and intubating me.
I don’t remember for three weeks, but my mom said they woke me up and I communicated, but I don’t remember. I remember only when they did my tracheostomy and moved me down to the box, my mother and Max (assistance dog), friends from the organization Black Horses or SKV (Wheelchair Sports Club) continued to come to me, and despite the unfavorable prognosis that I would still be on oxygen, I finally got rid of trachostomy.
I was eventually transferred to Motol Hospital because they suspected myasthenia Gravis autoimmune disease, but they weren’t sure, and they’re specialized in Motol. This disease was eventually confirmed and I was treated, thanks to which I am at least half way there before. Unfortunately, there is a risk with this disease, namely that any inflammation or overload can send me back to the ventilator, but even that did not stop me, and slowly but surely I return again to sports, skiing, cycling or running water.
I will be very happy if you look at past contributions or how to help and you helped me choose the handbike and the supplement. You can help by sharing or adding any amount and spreading it further.
If you want to support me, I will be very grateful 🙂
I appreciate every post or sharing.
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