R PE

Rachelle's Wingwalking

Fundraising for CDG UK
£1,701
raised of £500 target
Donations cannot currently be made to this page
CDG UK

Verified by JustGiving

RCN HMRC Registered
We raise awareness and funds for research to support families affected by CDG

Story

Hi everyone- thanks for visiting my JustGiving page.

What am I doing?

So I've decided to complete a wing walk (!) on my 30th birthday to raise money for CDG UK- a charity that supports those affected by Congenital Disorder Glycosylation. CDG is a life limiting condition which my best friend's nephew, Elijah, has been diagnosed with.

Why am I doing it?/ About Elijah

At eight months old, Elijah (photos below- yes he's gorgeous!) was diagnosed with CDG Type 1a - a very rare inherited metabolic disorder which affects most body systems especially the nervous system and liver. As the condition is so rare, and so little is known about it, there is currently no cure. CDG symptoms vary dramatically but common symptoms, all of which Elijah experiences include: low muscle tone, feeding problems, crossed eyes, variable growth delays and variable developmental delays. Unfortunately, 20% of CDG1A babies do not make it past the first year of their life.

However, whilst there is currently no known cure, CDG UK are doing an amazing job supporting families, raising awareness, and working closely with Great Ormond Street Hospital to develop research into the condition. The more money that is raised, the more support and medical knowledge children like Elijah will receive, resulting in a better quality of life and a greater chance of finding a cure. Please have a look at Elijah's mum's blog below to find out more about Elijah and CDG. 

https://bornwithcdg.wordpress.com/elijah/

What does a wing walk involve?

Basically, I'm going to be stood on and strapped to the top wing of a bi-plane whilst being flown over the skies of Essex. Apparently, if I don't get blown off during take off, I'll be doing some low-level fly pasts, dives and zooms past the poor onlookers at speeds of up to 135mph...

Where will the money that is raised go?

My brilliant parents have said they will pay for the cost of the wing walk for my 30th birthday meaning that every single penny raised on here will go directly towards CDG UK to help children like Elijah. So if you would usually buy me a present for my birthday, please don't- please sponsor me instead; and if you wouldn't usually buy me a present, then please just sponsor me anyway! 

Thank you in advance to everyone who sponsors me- embarrassing photos and videos of the wing walk will of course be posted on here after the event! 


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About the charity

CDG UK

Verified by JustGiving

RCN HMRC Registered
Congential Disorders of Glycosylation (CDG) is an umbrella term for a very rare group of diseases that causes severe disability. There is no known treatment or cure. As the disease is so rare, there are very few children in the UK affected. CDG UK provides a support network and a patient voice.

Donation summary

Total raised
£1,700.70
+ £312.50 Gift Aid
Online donations
£1,700.70
Offline donations
£0.00

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