Team George

Raising money for CDKL5 UK

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

Story

In January 2022 George was diagnosed with the CDKL5 deficiency disorder. Each day can be difficult for him as he battles the worst symptoms associated with the condition. Unable to talk, move or feed orally - and with seizures and gastro/respiratory issues every day - he requires constant supervision and support. Despite all these issues, he inspires the whole family by being so resilient, calm and content - he even shares the occasional smile that melts our hearts!

It's been both a challenging and rewarding 3 years as we do our utmost to make sure George lives his best life. He has incredibly supportive family and friends, as well as a wider network of healthcare professionals, supporting charities, and a CDKL5 family support network.

3 years after the diagnosis. It's time for his family (Dad Michael, Uncle Neal and Aunty Eilidh) to raise some awareness of the condition. We'll do this by fundraising for the CDKL5 UK charity, who are raising awareness, supporting families and carers, and raising funds for important research.

We will be running the events listed below in 2025, and we'd hugely appreciate your support for a charity that is so close to our hearts.

Given what George goes through every day, there is no better motivation for getting the miles in!

Thank you for your support!

Inverness 1/2 Marathon (March)

Stornoway 1/2 Marathon (May)

Scottish 1/2 Marathon (August)

Loch Ness Marathon (September)

Team members (5)

Donation summary

Total
£15,424.28
+ £3,102.00 Gift Aid
Online
£15,424.28

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