A Birmingham father has shared his terrifying experience of discovering his son has a life-limiting condition called Dravet Syndrome.
Adam Shirwa from Rubery watched helplessly as his six-month-old son Mo had his first seizure. "He started shaking against me - I was terrified and I didn't know what to do," Adam said.
Mo was initially misdiagnosed with febrile convulsions but continued having seizures three times a week. A critical incident in Birmingham city centre, where Mo had an hour-long seizure, led to further investigation.
Dravet Syndrome affects one in every 15,000 live births and is one of the most treatment-resistant genetic epilepsies. The condition causes multiple daily seizures, learning disabilities, and carries a higher risk of sudden death.
Adam explained how the condition has robbed Mo of a typical childhood. "For example, the way sunlight moves across the grass could trigger seizures, so we've never been able to spend much time outdoors," he said.
Mo, now approaching his teenage years, has the mental age of a four or five-year-old. Dravet Syndrome UK is working to raise awareness so more families can access earlier diagnosis and support.
The charity hopes sharing stories like Adam's will help reach more people in need of vital support.
