Dani and Family

Daniel was born on June 27, 2025, into a family with two older healthy brothers. Around the middle of his third month, we noticed he wasn't lifting his head and seemed more relaxed than expected, but we attributed it to a virus he had caught shortly before.

At the beginning of the fourth month, we sought the opinion of a neurologist, who referred us to the Specialized Children's Hospital "Ivan Mitev," where we were admitted for a full workup. There we learned that Dani's creatine phosphokinase levels were drastically above normal — a sign that this was a disease affecting the muscles. Various hypotheses emerged, but only genetic testing could provide a definitive answer.

In November, we gave blood for whole genome sequencing for muscular diseases — for Dani, for mom Lazarina, and for dad Stefan. In the meantime, we started active rehabilitation and swimming. This was perhaps the hardest period — a time of uncertainty, fear, and countless questions. A thousand possibilities and a thousand different outcomes swirled through my mind.

At the end of January, the diagnosis came — Dani has an extremely rare genetic disease that affects his muscles — LAMA2. That's when we began searching for information and gradually realized that our lives from here on would be different from anything we had ever imagined.

Dani is still very young and a long and difficult road lies ahead. But behind him stands his big and close-knit family, our loved ones and friends, as well as all the specialists we work tirelessly with for his development.

We strive to give him the best and to move forward, day by day, with faith and love.