Boy's Brave Battle With Rare Epilepsy Condition

Rebecca shares her journey with her seven-year-old son, Tyler, who lives with Lennox-Gastaut syndrome, a rare and severe form of epilepsy affecting 1-2% of children with the condition. This lifelong, treatment-resistant epilepsy causes frequent, debilitating seizures, often unpredictable day or night. Rebecca advocates for greater public understanding, particularly regarding reactions when Tyler experiences a seizure in public.

Tyler, who is autistic and non-verbal, has tried multiple medications without success and is at high risk of sudden unexpected death in epilepsy. Despite these challenges, he attends The Bridge school in Sutton Coldfield. Recently, Tyler received an Epilepsy Star award from Epilepsy Action for his bravery. A new treatment, fenfluramine, began rolling out in February 2025 for children with the syndrome, offering new hope.

While acknowledging the difficulties, Rebecca expresses gratitude for Tyler's ability to still enjoy school and playtime. Approximately 60,000 children in England live with epilepsy, with a small fraction impacted by Lennox-Gastaut syndrome. The introduction of fenfluramine marks a significant development, providing a non-cannabis-based treatment option for affected families.