Nael, from Lebanon, passed away this past week of August 2026 at the age of 19.

His family shared that he was full of life; his smile was so bright despite Lafora. Before his symptoms began, he loved biking, running, and playing soccer. Please read the message below from his family and keep his memory in your heart:

“Nael was a happy, healthy, and completely normal child. In 2019, at just 12 years old, he experienced his first seizure. At the time, we had no idea that this would be the beginning of a devastating journey that would change his life and our entire family forever.

Over the next few years, his condition progressively worsened. By around 15 years old, in 2022, the disease had begun to severely affect his body and his ability to move and function. He went in and out of hospitals as his condition continued to decline.

Lafora disease slowly took away the things most of us take for granted. Nael eventually lost his ability to walk, talk, and function independently. Watching a child who had once been healthy and full of life become so limited by this terrible disease was heartbreaking for our entire family.

After years of fighting and countless hospitalizations, Nael’s body ultimately became overwhelmed by the progression of the disease and its complications. He passed away earlier this week in 2026.

Nael was so much more than his disease. He was a son, a family member, and a child who deserved the opportunity to grow up, experience life, and have a future. We want people to know his story and remember him for the beautiful person he was, not only for the disease that took him from us.

We are sharing Nael’s story because we desperately want to help raise awareness of Lafora disease and support the search for effective treatments and, ultimately, a cure. If sharing his story and photos can help researchers, doctors, or another family recognize this disease sooner or help move research forward, then we know Nael’s life can continue to make a difference.

We hope that by telling Nael’s story, his memory can become part of something bigger — a future where no other child and no other family has to go through what we experienced.

With love and hope,

Nael’s Family”