Beth Allen, nine, suffers from Dravet Syndrome, a rare yet severe condition that leads to frequent seizures and a host of developmental challenges. This genetic epilepsy affects one in 15,000 live births and presents serious risks, including a high chance of Sudden Unexpected Death in Epilepsy (SUDEP). Beth experiences significant challenges, such as reduced mobility and autism, which profoundly affect her family's life. Jennifer and Tom Allen are sharing their story to support Dravet Syndrome UK's campaign, advocating for better recognition and care for families facing this devastating diagnosis.
Beth has Dravet Syndrome, a severe condition characterized by frequent seizures, learning disabilities, and associated challenges, impacting her family's daily life and wellbeing.
Dravet Syndrome affects one in every 15,000 live births, yet often goes misdiagnosed, leaving families like the Allens to struggle without adequate support.
Jennifer Allen described her fear of leaving the house with Beth, fearing seizures could occur anytime, demonstrating the constant anxiety parents of children with Dravet face.
As a life-limiting condition, Dravet Syndrome has an associated high risk of SUDEP, with many affected children not reaching adulthood, highlighting the urgency of awareness and research.
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