From birth to today
A quick look at the key moments — and below, the full story as told by my parents.
I was born
As a seemingly healthy baby. Nothing suggested anything was different.
The first questions
My parents noticed I wasn't developing like other babies. The search for answers began.
9 months of waiting
After examinations at Motol Hospital, the diagnosis came: merosin-deficient congenital muscular dystrophy.
Living life to the fullest
I go to school, I have friends, I play, I travel. I'm different. But I have a beautiful life.
Adam was born in 2013 as our first-born son, a seemingly healthy baby. We were first-time parents and didn't notice anything unusual — even the doctors at check-ups said he was a healthy boy.
At home, we gradually noticed that Adam's development wasn't quite going the way it should. He wasn't lifting his head, wasn't rolling over, wasn't reaching for toys. Around the fifth month we requested a neurology exam — and after long nine months of waiting, the diagnosis came: an incurable, rare neuromuscular disease, with a prognosis of needing a power wheelchair for life.
It brought us to our knees. But Adam was, and is, an amazing, clever boy who deserves a beautiful childhood — just like anyone else. We stopped asking "why us" and started looking for ways to make life as easy and enjoyable as possible for him.
Today Adam is 13. He attends a regular elementary school with a teaching assistant, does physiotherapy and repositioning every single day, and sleeps on a home lung ventilator at night. And yet — or maybe precisely because of it — he has an incredible zest for life: he plays PlayStation, he's interested in mythology, listens to true crime podcasts, goes to hippotherapy, and loves spending time with family and friends.
What is merosin-deficient congenital muscular dystrophy?
It's a congenital condition from the group of congenital muscular dystrophies, which shows up already in newborns or infants — with reduced muscle tone, limited mobility, and the gradual development of joint contractures. Muscle weakness can progress with age and affect breathing. There is currently no cure — only consistent, lifelong rehabilitation can help.
