2023-11-10 13:12:00
In the first years of his life, Honza developed like his peers. Problems arose in kindergarten, when he could not climb the stairs, he was often very tired. “The disease hit me the hardest around the age of eleven, I stopped walking and already had a mechanical wheelchair. I took it as it was and made peace with it,” said Honza, adding that after that he had to transfer to another elementary school that is barrier-free.
He gets the job done
He graduated from high school and is now working. “I make graphics, edit videos and manage websites on the computer,” he boasted.
Anyone who gets to know Honza will find out that he is a big easy-going guy. “Of course he also had periods of rage. But he doesn’t cry or break down. For example, when one of his peers with the same diagnosis dies, he just says that it’s part of life. In short, he has it sorted out in his head. What some people can’t do in their whole life, he already manages in his twenties.” said Honza’s mother Monika.
Duchenne muscular dystrophy
The most common childhood muscular dystrophy, this disease affects approximately one in 3,600 to 6,000 live birth boys and is an X-linked disease. The disease is characterized by wasting and loss of active muscle mass. Initially, a boy is born without any symptoms, they start creeping up from around two years of age – difficulty walking, after a while sitting in a wheelchair.
The Parent Project is dedicated to Duchenne muscular dystrophy. Tand even published a book with the stories of the boys and their families called In the Shadow of Duchenne.
Sister Bára (21): I know I’ll lose him one day!
Bára Vaňková (21) only found out that her brother had a serious health problem when she was around twelve years old. “Until then, I didn’t notice it at all. He walked, he fell. I didn’t attach any weight to it. But when he got into the wheelchair, I started googling and found out what the disease actually means.” describes Bára, who later also started seeing a psychologist.
“I was a teenager, I also had other problems. Multiple problems came together at once and it became self-harming,” she admitted. Now he takes his brother’s illness more in stride, but he knows that one day he will lose his brother. “We don’t talk about it with our parents. I think mom and I will get along, dad will be our support. It’s going to be terrible for a few years. And then I hope we learn to live with it…,” added Bara.
Jiříček with SMA made further progress on Facebook
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