🔉UPDATE: 3rd March 2025 - Unfortunately doctors orders have meant I have had to ease up on training for the marathon, meaning I need to postpone taking part in the Brighton Marathon event on April 6th. I am really disappointed as I have put in sooooo many hours training over the last 6 months, and bizarrely, have actually enjoyed the running 😂 I will absolutely be running a full marathon whilst fundraising for CDG Awareness either later this year or Brighton Marathon 2026. I am so appreciative of those who have donated and supported so far to this cause that is close to my heart. Once the new date is confirmed I will be sure to shout about it & let you all know!!! 🏃(The Just Giving event will still read 6th April 2025, as I'm unable to change the date of the event on here, but I will be adding the new date to the information and updates part of the page) Thank you again for all the donations and support so far 💕

**SEE UPDATE ABOVE** I will be running the Brighton Marathon on 6th April 2025 to raise money for CDG UK. ** SEE UPDATE ABOVE**

My beautiful nephew, Arthur, was given a general diagnosis of CDG in April 2020, aged 2. He then got the specific diagnosis of PMM2-CDG at the end of December 2020. There are only around 1000 children and adults diagnosed with PMM2-CDG in the whole world.

Arthur is such a happy and determined little boy but having CDG means that he finds many basic daily tasks more difficult to complete than other children his age.

His Mum, Gemma, says "As a family we have to constantly think of new and different ways to help Arthur be as independent as possible. Arthur still needs full support for all of his personal care requirements. Due to the extra effort and time it takes for Arthur to complete these tasks, it often means that Arthur can become exhausted more quickly. When Arthur is exhausted he is then more likely to fall ill. The more tired he gets he also then begins to struggle more with tasks such as eating and toileting. Arthur will struggle more and more to eat solid food and end up relying on smoothies to keep his caloric intake up. In spite of all this Arthur remains a happy and bubbly little boy with a wicked sense of humour."

No one I know had heard of CDG. I hadn't heard of CDG. None of us knew until we needed to know. And with that, I would like to help raise funds for CDG UK who do a wonderful job of supporting families affected by CDG, educating others and helping those who need it.

I appreciate there are still 11 months to go, however I thought that with it being CDG Awareness Day it was the perfect time to share the page 💚

I have never run more than 10km in my whole life, so 26.2 miles (42km) seems more than a little daunting right now... Nevertheless, I'm looking forward to the challenge and really hoping to raise some funds for a charity close to our hearts.

For more information on PMM2-CDG, please watch the short video below 💚

https://youtu.be/WI8-ZKWgAcU?si=7JWoOsE9i7ofFl9l