Our gorgeous, blue eyed, one-year old Freddie died suddenly and unexpectedly on the 10th April 2017, at hospital, in London. He was incredibly loved and is missed every single day by his Mummy and Daddy (Amber and Steve) and of course by each and every one of his family. In memory of our son, we are raising money for Dravet Syndrome UK because Freddie had Dravet syndrome, a life-limiting form of epilepsy. Children with Dravet syndrome are at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP) than children with other types of epilepsy.

At the time of writing (the end of March 2018) we have just passed what would have been Freddie's 2nd birthday and are very soon to approach the 1st anniversary of the day he died. Our lives have been irrevocably changed by his loss and it’s been impossibly hard to navigate the last year without him.

One of the very important, but difficult things that has happened since Freddie's death, is that we've learnt that he had a rare life-limiting form of childhood epilepsy called Dravet syndrome. This is a severely disabling type of childhood epilepsy which begins in infancy and is thought to affect approximately 1 in every 19,000 people. 

Usually, as happened with Freddie, the initial seizure takes place in the first year, most seizures are prolonged and accompany a fever caused by an illness. Freddie was just 6 months old when he began having his seizures. The course of Dravet syndrome is variable from one child to another but development may slow down or regress, sometimes severely, and often children experience mobility issues. Symptoms usually escalate into a child's second year and Dravet often doesn’t respond to conventional anti-epileptic medicine so additional treatments can be needed to control seizure symptoms.

Dravet syndrome is most often caused by mutations to the SCN1A gene which occur spontaneously - rather than being inherited (this gene affects the body's sodium channel). Freddie had a genetic test before he died, and although the results came back afterwards, they tell the experts he had a new and previously unrecorded change in the SCN1A gene. Put simply, this gene change was the cause of his symptoms and he was diagnosed as having had Dravet syndrome.

Sadly, but very importantly, children with Dravet syndrome are at a higher risk of sudden unexplained death in epilepsy (SUDEP) than children with other types of epilepsy. It is now thought that what happened to Freddie in April 2017 was a SUDEP - that tragically he died as a result of SUDEP because he had Dravet syndrome.

Because we did not know about Freddie's Dravet syndrome when he died, we are adding Dravet Syndrome UK to our fundraising page now. We’ve relied considerably on this independent charity's clear and well written online resources to learn and understand our son’s condition over these very difficult months. Their dedication to improving the lives of those affected by Dravet syndrome through support, education and medical research is extraordinary. Many children with Dravet syndrome have a good life expectancy, however children who develop severe disabilities may have problems which will affect their lifespan. Unfortunately, there is no cure for Dravet syndrome and treatment focuses on controlling or minimising seizures in order to reduce their impact on childhood development. Lots of support is required for the challenges that children, like Freddie who have Dravet syndrome, and their families who look after them, may face. The services the charity offer for families are a real lifeline as they provide a valuable night-time assistance programme to help monitor seizures, financial help with monitors and grants, coordinating annual family trips and a community network to link families up across the UK.

Dravet Syndrome UK also raise awareness and understanding of this under-diagnosed condition within the professional community so that early and more accurate diagnosis of Dravet syndrome can be made, which for us is a particularly important part of their work that we wish to support. Freddie’s death would always have been completely unexpected, even if his condition had been known earlier, although we may have known more about his increased risk of SUDEP. This knowledge may not have prevented Freddie's death, but we did not have the chance to try by having awareness of the ways that Dravet can be monitored and treated. As Freddie's family, by raising money for Dravet Syndrome UK we feel we can do something constructive to contribute to the understanding and treatment of this 'catastrophic' epilepsy.