Lindsey Smith
George's fundraising page for CDKL5 UK
Fundraising for CDKL5 UK
Story
2019 Events Calendar:
- Sat 23rd March - CDKL5 UK fundraising Ceilidh - Stuartfield - Tickets all sold
- Sunday 31st March - Suzanne (Grannie) and Lynn walk 97 miles along the West Highland Way in aid of CDKL5 UK
- Saturday 18th May - Be gungho - 5k inflatable obstacle course
- Sunday 2nd June - Aberdeen Kiltwalk 26 mile walk from Portarch to the Duthie Park
- Sunday 21st July - Uncle Mike's 100 mile cycle
- Sunday 25th August - Aberdeen half marathon
- Sunday 15th September - Tea Dance Fraserburgh
- Saturday 21st September - Banchory Beast Race - 10km muddy obstacle course
- 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.
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.