Hi everyone,

As some of you may already be aware my daughter Freya was diagnosed at 10 months old with a rare metabolic disorder - CDG (Congenital Disorder of Glycosylation) PIGW. There are over 100 different types of CDG and around 1,000 children in the world with CDG, but there are only 5 other children in the world with Freya’s particularly type. 

Freya is now 15 months old (January 2022). She is unable to hold her head up, sit crawl, roll, walk or talk BUT, she loves her food and watching her big sister and has a beautiful cheeky smile and laugh. 

In order to raise awareness of both CDG and the work that CDG UK do I have signed up for the Cotswold Way Ultra Challenge in June 2022. I will be running 100 KM in one day through the Cotswolds, climbing nearly 3,000m. 

CDG UK is the national charity for CDG and they provided a lot of support for patients and families and organise family days for affected children and families to meet and share experiences. You can read more about what they do on their website. https://cdg-uk.org/

If you would like to sponsor me I would be so grateful for your support. CDG is still a relatively new disorder and, particularly in Freya’s case, there is very little known about the disorder and so any support for CDG UK can help those affected by it.

Thanks for taking the time to visit my JustGiving page.

David