Story
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CDKL5 awareness month came to an end in June and there have been so many amazing stories of hope, love and determination. This has inspired me to get moving in 2005 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 by 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 entered a different running event each month and pushed 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 was significantly more than I had ever run within a year and I was very busy, but the support from so many was heart warming and helped me reach my initial fundraising target of £2004.
The events I completed during the first year of the challenge were:
July: Aintree 10K.
August: 15K inflatable obstacle course.
September: Keswick Half Marathon.
October: The Ultra Loops and the Petzl Night Runner 10K at Delamere Forest.
November: Loggerheads Half Marathon.
December: The Drop Kendal and the Big Xmas Trail Festival Half Marathon.
January: 7 half marathons in 7 days with the final one being the Delamere Trail 13.
February: It was meant to be the Whinlatter Moon Runner 10K but the frosty conditions meant a need for a change of plan so on rare disease day it was the Winter Warmer Half Marathon at Croxteth Park.
March: It was meant to be the Pierrepont Plod but the paths at the National Watersports Centre were flooded so it was 6 hours of 5K laps around my home town.
April: Peak Rail 7 Runner vs Steam.
May: Rob Burrows Leeds Marathon.
June: Windermere Marathon.
The journey for CDKL5 warriors doesn’t end after a year, their battles continue, so my journey of raising awareness for these wonderful people and the charity that supports them and their families continues. The schedule for the second year is:
July: Endure 24.
August: The postponed Pierrepont Plod.
September: Keswick Half Marathon.
October: Kielder 10K and marathon and the Petzl Night Runner 10K at Delamere Forest.
November: Winter Wirral Ultra.
December: Christmas Pudding 10K.
January: Petzl Night Runner 10K at Rivington and the Delamere Trail 13.
February: Grizedale Forest Trail 13.
March: St Helens 10K.
April: 7 half marathons in 7 days with the last two being Monsal Trail and Howgils Trail 13.
May: The Lap.
June: To be determined but something a little more outside the box.
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