Thanks for taking the time to visit my JustGiving page.

We, me, Julie Wilson, Sue Roberts, Nicola Beyga, Anne Thorne and Madeline Bolton are running the Liverpool Run or Dye 5K in memory of a neighbours young son who went to bed one night and never woke up in the morning.

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. Joe was aged 14 years, 2 months and 16 days old.

  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.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.