Story
What is CDKL5 Deficiency Disorder (CDD)?
CDKL5 Deficiency Disorder (called CDD for short) is a rare condition that affects the brain and the body. It happens because of a change in a special set of instructions inside the body, called a gene, that helps the brain grow and work properly.
Because of this change, children with CDD might have trouble learning new things, moving their bodies the way they want, or talking. Many also have seizures, which are like sudden ‘storms’ in the brain that can make their bodies shake or stop moving for a little while.
Even though CDD makes some things harder, children with the condition can still learn, play, and share love in their own special ways.
I consider myself very fortunate to live in the beautiful county of Cornwall, with its dramatic and sublime coastline.
A while ago, I had the time and opportunity to walk a length of the South West Coast Path (SWCP). It started one late spring/ early summer day, with favorable weather forecast and time on my hands, I wanted to experience Cornwall's dramatic coastline, and challenge myself (following a recent procedure) to walk the coastline from Portheleven to Lizard Point (a respectable distance of 21km). Completing that walk seeded the idea of walking the entire SWCP so the following week, I returned to Lizard Point, to resume the SWCP and walked another 23km to Porthallow.
Recently (November 25) staying on the south coast section of the SWCP, I enjoyed another 22km of walking from Penzance to Portheleven, and by the time you might be reading this, with a companion we will have walked a section of the SWCP from Porthgwarra to Penzance (another 20km).
Now determined to complete the entire 1014km of the SWCP, by completing the remaining sections I'd like to raise the awareness of CDKL5 which is still a relatively 'little known' condition that affects the lives of children and their families significantly.
The real story here is about my nephew 'Caio' and that of his parents, and those children and families like them.
The challenges that families with CDKL5 children face are immense. Speaking with my brother in-law to gauge some extent of the financial costs involved in caring for a CDKL5 child is frankly 'staggering'. During our conversation, Patrick explained how their home required substantial modifications in order to provide a good standard of living for Caio and his parents, and such costs are not covered through any form of insurance.
For example all doorways required widening, ramps had to be installed at all levels of the building for safe access, wet rooms were needed, and so much more, simply to provide safe access for Caio and for carers to support him.
It would be amazing if you can join us in raising awareness of CDKL5 as we embark on the journey of SWCP. With a modest target of raising £50,000 initially in mind, such funds would help families in the UK that provide care for children with this condition, and in doing so, improve conditions for the children that have this condition.
Having now covered 86km of the SWCP, I aim to complete the remaining 928km over a number of sections/stages with Caio and the famillies with CDKL5 at the heart of this challenge.
A dedicated website where you can follow our journey and join us if you wish can be found here.
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