07/07/2026
So Freddie had a check up on his VNS device today at QMC. (For those that don’t know, a VNS is a device in his chest that helps control his seizures for people with drug resistant epilepsy.) We weren’t pushed for time today, so I decided to take him on the tram. He loves the tram and it takes away the stress of trying to park at the hospital.
Really positive appointment today. She downloaded the data from his device as it records all seizure activity. She said she’s never seen such good data on one of these devices. His seizures are so well managed right now that the device isn’t working that hard. We’re absolutely gobsmacked.
To put in perspective, we’ve always been told that his epilepsy would be what takes him from us and his life would be short. Three years ago, he was seizing round the clock and was put into end of life care. We were even given a Disney ‘Make a Wish’, as we were expecting a really bad outcome. This device has not only pulled our incredible boy out of end of life status, but he’s stronger than ever. We’re now having discussions about what to expect in adolescence, which is a conversation we never thought we’d have.
My incredible, wonderful boy! I’m so proud of him and how far he’s come.
