Milosz’s Superhero Story

Milosz is a SLC13A5 Superhero. Here are a few fun facts Milosz’s family shared with us!

• Name: Milosz
• Age: 6
• Homecountry: Poland
• He has an older brother who is nine years older.
• He is in kindergarten and he LOVES going to school.
• He really enjoys the company of animals.
• He is very sociable.

Milosz’s Medical Journey

On the first day of life, Milosz had his first epileptic seizure. The first diagnosis was epilepsy, but we decided to seek a more accurate diagnosis. In 2018, genetic testing gave us a diagnosis of SLC13A5 mutation. Our biggest challenge since the beginning of Milosz’s illness has been controlling his epileptic seizures. Currently, we continue to fight mainly against epilepsy but also focus on intensive comprehensive rehabilitation. Milosz attends physiotherapy, works with a speech therapist and with a child psychologist. The most difficult thing for Milosz is that he can’t speak, and there is so much he would like to tell us.

Milosz attends a kindergarten for children with disabilities. He does not walk on his own, but with our help he is getting better and better. He moves on his own by crawling. Milosz has reduced muscle tone, his hands are not fully functional. He has a lot of problems with drooling, but we are working on it with better and better results.

We love him so much and hope to find a cure one day soon.