He is 27 years old, a Sagittarius, and his mom says he's, in a good way, kooky. Because he's huge optimistic, He's a fighter and nothing can knock him down. Not even his diagnosis. He doesn't succumb to depression or anxiety, he dislikes pity, and he doesn't want to just get by in life. He wants to live and enjoy himself, even with his disability. He loves to travel, enjoys sports, and is sociable. Meeting Lukáš is an experience.
Until the age of 13, he was healthy. The illness came gradually – it started with scoliosis, hand tremors, and an ataxic gait. Neurologists in Slovakia couldn't figure out the diagnosis. Luky's condition, meanwhile, was constantly worsening. He could still walk on his own through high school, but by the end of his studies, it resembled a drunken person. „More than once, they thought I had been drinking; it didn't help that I used a cane,“ Lukáš laughs. Soon, however, he started using a wheelchair.
Lukáš completed his master's degree in social work, works for an international banking company, and is pursuing his doctorate with a thesis on innovative medicines. He gradually became publicly involved For patients with rare diseases, he recently founded a patient faction called Friedreich's Ataxia Slovakia, which operates under the NGO Blue Butterfly. He is fighting for his medicine as well as for the availability of medicines for patients with rare diseases. Because he felt and still feels the helplessness firsthand. When you know a cure exists, but you can't get it. „It's like a death sentence for you. Without the medicine, patients like me live to an average age of 37. Slovakia is at the bottom of the list for drug availability, not only for rare diagnoses but also for oncological diseases. And that's crazy. Nothing is more valuable than human life.“
Friedreich's ataxia. Lukas has been living with it for more than half his life, but he only got the correct diagnosis recently – in 2024. His brother, who works in Germany, wrote to a clinic, and they replied immediately: „Have them tested for Friedreich's.“ And everything was confirmed. In 2024. Fortunately, there is now a medication that slows progression by up to 50 percent, and even improves the condition. Who wouldn't want that? Except that in Slovakia, patients have to pay for it themselves. And the sum is crazy, around a thousand euros per day. For life. „I want to live, work, function. I just need the medication.“ That's why he fights uncompromisingly and loudly. And he doesn't intend to stop. There have been many promises from the Minister of Health, but the system remains inactive. It hinders treatment and takes away the hope of life. Every minute without treatment means pain, deterioration, or death. Thanks to a fundraiser, he managed to buy medication for for several months, after just five, Lukáš's articulation and gait improved, and tremors decreased. He is in the gym daily because exercise is very important for this diagnosis. „I need expensive medication, rehabilitation, and mental well-being for my life. And he came to ADELI for rehabilitation. „I came to test a new rehabilitation method using the Cyberdine exoskeleton, which helps with walking. I place great hope in this rehabilitation, I believe it will help me maximize the effects of the medication and improve the quality of my movement, gait, and life overall. Despite the diagnosis, which limits me to a great extent, I believe it will get better and better, I enjoy life very much. I want to help not only myself but also other people.
During training with the exoskeleton, Lukáš Hrošovský acknowledged the human contribution:
„I've never experienced a physiotherapy team like this before. I was supposed to walk correctly, lift and place my legs. All the while, they were correcting my pelvis, head, and arms, and paying attention to my breathing. And the exoskeleton doesn't allow me to make those bad, compensatory movements. ... Before starting therapy, we always had a warm-up, and I spent almost 2 hours daily on the exoskeleton. ... Unlike other rehabilitation centers where people spend more time waiting for therapies than actually doing physiotherapy, here at ADELI, you can barely move from one therapy to the next. I am also surprised by the kind and warm approach of the entire staff here. I claim that above all the concerns a person with a neurodegenerative disease experiences, kindness, expertise, and humor prevail here at ADELI.“
