We are running the London Marathon in April 2024 to raise money for an incredible charity, Dravet Syndrome UK, who have supported our nephew/grandson Max who was diagnosed at the age of 15 months with Dravet Syndrome.

Dravet Syndrome is a rare neurological condition that encompasses treatment-resistant epilepsy, intellectual disability and a spectrum of associated conditions. Every child or adult with Dravet Syndrome is different, with some affected more severely than others or impacted by different comorbidities.

Max is a happy, friendly and sociable toddler who has a great sense of humour and enjoys making people laugh. Whilst he loves to curl up on a lap to read a book or watch Paddington, he is happiest outside spotting buses and planes, jumping in muddy puddles and driving his red and yellow car.

At 6 months, Max had his first seizure which we thought was a long febrile convulsion. The seizures persisted and ranged from 10-25 minutes, so he was sent for genetic testing at Great Ormond Street. Just before his first birthday, Max had a seizure lasting 50 minutes that resulted in him being placed on life support at Great Ormond Street. During this time we came very close to losing him. Thankfully Max being the strong little boy he is he turned it around and after six weeks at GOSH, he came home. Since then Max has been on life support a second time and has come close to being placed on it multiple times since. His seizure frequency has ranged from every 3 days to our current record of in excess of 140 days seizure free.

Max currently has good seizure control, is continuing to meet milestones and is thriving, however, we know that this may change. We remain optimistic due to the work of Dravet Syndrome UK who, not only support the families of those impacted by Dravet, but fund medical research to increase the understanding of Dravet Syndrome, improve its management, and hopefully, one day find a cure.

Until that cure is found, Dravet Syndrome UK will continue to improve the safety of those living with Dravet by providing vital epilepsy monitors that Max uses every night. These monitors are crucial in helping to lower the chances of Sudden Unexplained Death in Epilepsy (“SUDEP”) which is unfortunately at the highest rate amongst those with Dravet when compared to other forms of epilepsy.

We are hoping by raising money for this amazing charity we can give another family peace of mind like Max’s family have with these monitors and contribute to Dravet’s hard work of finding a cure.

Thank you for taking the time to visit our page, to learn a bit more about Dravet and help us to raise awareness. If you are able to sponsor us and support this amazing charity, our family will be extremely grateful.

Sophie and Cheryl xx