Story
Thanks for taking the time to visit my JustGiving page.
My nephew Joe was aged just 14 years, 2 months and 16 days old when he was tragically taken away in his sleep.
Joe suffered from Dravet Syndrome which is a neurodevelopmental disorder. This condition is a rare form of epilepsy which also results in developmental delay, autism, ataxia (unsteadiness), sleep disturbance, and behaviour problems. Children with Dravet syndrome are at a higher risk of sudden unexplained death in epilepsy (SUDEP) than children with other types of epilepsy.
We are asking for you to support our efforts in the hope that one day a cure can be found for this terrible condition to prevent other children from dying and to prevent other families from suffering the pain and devastating loss of a loved one from Dravet syndrome.
Please be as generous as you can with your donation and please re-post Joe’s story in order to raise awareness of this rare condition.
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