Abbie, Emily, Kate, Katie, Laura, Lauren, Leanne, Lindsay, Megan, Molly, Sophie, Vicki and Will, climbed Holmbury Hill, Leigh Hill and Box Hill during a 22 mile circular walk taking over nine hours to complete! The team raised over £2,700 including match funding from FIECON.
Through our work at FIECON, we experience first hand how patients and their families live with rare diseases and we help to launch treatments for these rare and often debilitating diseases such as Dravet Syndrome.
Dravet Syndrome is a complex and devastating condition. As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience for families. Dravet Syndrome UK, guide families through the challenges, provide a comprehensive range of emotional, practical and financial support services and reassure the patients and families they are not alone in dealing with a Dravet Syndrome diagnosis and life with this rare disease.
