Dear friends and supporters,
We are reaching out to share the story of our son Yanis, a vibrant boy whose life changed dramatically due to Lafora disease, a rare and progressive form of epilepsy that affects his daily life in profound ways.
Yanis, 17 years old from London, is an active kid who loves football, spending time with friends, and watching Marvel movies and "The Vampire Diaries." He’s always been dedicated in school and has volunteered to help the community. However, everything shifted in April 2021 when he had his first seizure at school. Initially diagnosed with juvenile epilepsy, he experienced more frequent seizures later that year. In December 2023, we received the heartbreaking diagnosis of Lafora disease.
Lafora disease leads to severe progressive neurological decline, causing recurrent seizures, cognitive challenges, and increased fatigue. As the condition progresses, it affects Yanis's ability to participate in activities he loves, like playing football and hanging out with friends. Daily routines that once brought him joy have become complicated and filled with uncertainty.
Yanis now requires constant supervision, and his dad has become his full-time caregiver to ensure his safety. Although he remains a loving and funny boy, the fear of seizures looms over us. Simple outings can become stressful as we worry about the possibility of another seizure, which could lead to injury.
There is hope on the horizon. We are waiting for approval to participate in the ION 283 safety study, a clinical trial that aims to slow the progression of Lafora disease. This trial could provide critical treatment options that may improve Yanis’s quality of life and that of other affected children. It is currently the only option for a cure for this disease.
We’re asking for your support to fund the ION 283 study. Your contributions can significantly impact the lives of children like Yanis, giving them a chance for better treatments and a brighter future.
Please consider donating and sharing our campaign. Together, we can help to save Yanis and other children affected by Lafora disease.
Thank you for your support.
With gratitude,
Nora Belalouache &
Yanis’s Family
