Nick and I have three wonderful children: George, who has CDKL5 Deficiency Disorder, Archie and Ronan. Our boys bring unique energy to the club with Archie & Ronan always causing chaos or bossing everyone around, while George, who uses a wheelchair, is nearby. Please don’t be alarmed if George has a seizure; it’s part of his condition.

George was diagnosed with CDKL5 Deficiency Disorder (CDD) at only 8 months old. He had his first ‘visible’ seizure at 6 weeks old and after undergoing a multitude of invasive tests, we finally received the devastating news that he had CDD. The disorder causes severe seizures and multiple profound & complex disabilities and is unfortunately classed as ‘terminal’, but George is beating all the odds and currently surpassing all expectations! George requires 24-hour care from us but we are fortunate to have a wonderful supportive family who help us all. He attends a fantastic local specialist school who have worked with him to achieve so much – they even helped him to ‘see’ after we were told by medical professional that he was blind = its amazing what can be achieved when people believe in your abilities, even against all odds! George now uses an Eye-Gaze device to communicate with those around him – and Archie loves to introduce him to apps like youtube and games on it! 

We do have to spend a lot of time in hospital with George, but thankfully we have a fantastic team of coaches and volunteers who keep the club running smoothly in our absence.