Saturday 23rd November - Ceilidh, Stuartfield Village Hall
2020 - Usborne books fundraising thanks to Christina Jane Wallace
2021 - January - 11 year old Lee Mauchline walks 50 miles for CDKL5
Our son, George, was born 5 weeks premature on 22nd Feb 2017. Around 6 weeks after his birth, he started having visible seizures (we later found out he was having these before he was born). After many months of horrific seizures, numerous stays in hospital and hundreds of tests, he was finally diagnosed with CDKL5 Deficiency Disorder in Aug 2017.
CDKL5 Deficiency Disorder is a rather rare, horrible condition for which there is currently no cure. The condition is characterised by difficult to control epilepsy, severe learning difficulties, vision problems, gastro and many more issues. George has experienced thousands of seizures to date - every drug we have tried has either failed or has not stopped the seizures. He cannot walk, talk, sit, stand or use his hands. He is also blind. He has unfortunately suffered from Infantile Spasms/hypsarrhythmia (West Syndrome), which is a devastating type of epilepsy, twice to date. The first time he experienced this he regressed back to being like a new born baby, losing all his skills. We are still trying to re-learn these.
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CDKL5 deficiency disorder is a rare condition which manifests in the first few months of life with rare and complex epilepsy. Children and adults with CDKL5 require life long support. CDKL5 UK aims to support families through direct support and patient advocacy. #Togetherwearestronger