Story
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CDKL5 awareness month came to an end yesterday and there have been so many amazing stories of hope, love and determination. This has inspired me to get moving whilst raising awareness and fundraising for a cause close to my heart. My nephew was diagnosed with the disorder when he was four months old after first experiencing the seizures two months before. The CDKL5 UK charity and community have been invaluable with providing advice and support to my sister.
CDKL5 deficiency disorder (CDD) is a rare X- linked genetic condition that causes early-onset seizures and severe neurodevelopmental impairment. Every person with CDD is unique with the condition affecting them in different ways and with varying severity but most cannot walk or talk. One thing that all those diagnosed with the disorder, have in common is that they are warriors with beautiful smiles and they never fight alone.
CDKL5 UK is a small charity dedicated to supporting individuals and families with a diagnosis of CDD and their vision is a world in which CDD and its effects are overcome by way of effective treatments and ultimately a cure.
From July 2025 to June 2026, I will be entering a different running event each month and pushing my limits with the overall aim of reaching 2004 km by the end of next year's CDKL5 awareness month in June. The reason I chose 2004 as my target is due to it being the year that the CDKL5 deficiency disorder was first identified. 2004 km is significantly more than I have ever run within a year and I know that I will be very busy, so it would be fabulous if you could support me throughout the year and help me work towards my fundraising target.
I have completed the first three events of the Aintree 10K, 15K inflatable and the Keswick Half Marathon with my amazing support crew by my side. The schedule for the rest of the challenge is:
October: The Ultra Loops which is a lapped event with the aim being to run as far as possible within 8 hours and the Petzl Night Runner 10K.
November: Loggerheads Half Marathon.
December: The Drop Kendal and the Big Xmas Trail Festival Half Marathon. The Drop is the really crazy one, as I will be dropped off 10 miles from the finish after being blindfolded and without any technology or map and I will have to find my way back. Time to get studying the OS map.
January: 7 half marathons in 7 days with the final one being the Delamere Trail 13.
February: Whinlatter Moon Runner 10K.
March: Pierrepont Plod which is a 6 hour challenge around a looped course.
April: Peak Rail 7 Runner vs Steam.
May: Rob Burrows Leeds Marathon.
June: Windermere Marathon.
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