Freddie's Mum and Dad
Freddie's SUDEP Action page
Fundraising for SUDEP Action
Story
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. We are raising money for SUDEP Action because Freddie is thought to have died of a sudden and unexpected death in epilepsy (SUDEP), as a result of his Dravet syndrome.
As we write this in March 2018, we are almost at what would have been Freddie’s 2nd birthday, and that is to be followed up very quickly by the first 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 hardest things that has happened since Freddie's death is learning that he had a rare life-limiting form of childhood epilepsy called Dravet syndrome. Sadly, but importantly children with Dravet syndrome are at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP) than children with other types of epilepsy. This is what is thought to have happened to Freddie - that he died as a result of SUDEP because he had Dravet syndrome.
SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy.
In the time since Freddie died in April 2017 this charity have helped us massively. Supporting us with expert advice whilst we were learning about Freddie's Dravet syndrome and how he could have died, advising us practically in advance of Freddie’s inquest and just being there to listen when we were struggling to make sense of everything. Through all of the horrendous stages and difficult facts we have needed to take in, the team at SUDEP Action have helped us with the gentlest of touches.
Freddie’s death would always have been completely unexpected, even if his rare type of epilepsy, Dravet syndrome, had been known about sooner. Although, we may then 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 SUDEP Action we feel we can do something constructive to contribute to discussions and awareness about the risks associated with any epilepsy. Having up-to-date information as a patient or family is really important to help manage this condition, as knowing how to minimise the risks linked to having seizures can help people with epilepsy stay safer. SUDEP Action works closely with researchers and specialists in the field to help with this and we want to support that research as best we can.