168 %
£1,681.33
raised of £1,000 target
by 113 supporters
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Matthew Baker avatar
Matthew Baker

Matthew's page

Fundraising for CdLS Foundation UK

168 %
£1,681.33
raised of £1,000 target
by 113 supporters
Donate
  • Event: London Marathon 2018, 22 Apr 2018

CdLS Foundation UK

The CdLS Foundation exists to ensure early and accurate diagnosis of Cornelia de Lange Syndrome ; promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime

Charity Registration No. 1054033

Story

Aye Up,  welcome to my JustGiving page.  Here's what I'm doing and why...

WHO - Me,  I'm a 38 year old lad from the deepest and darkest area of Peterborough who has no interest in running (true fact)!  I'M 5"11 and weigh 101kg, so I'm by no means quick on my feet.

WHAT I'M DOING -I'm running the 2018 London Marathon to raise money for the Cornelia de Lange Syndrome Foundation charity. charity no. 1054033

WHAT I WANT - Donations of any size please, obviously the bigger the better, but every little helps. Thank you!

WHY -  Get yourself a coffee this is going to be a long one...

Nearly 4.5 years ago my third (and final) little monster was born (Emma Kate). Emma always seemed a little delayed when we compared her to other children of similar age and stages that her sisters had gone through.  Some of the medical experts said "all children are different, she'll catch up", but we or Andrea (the wife) suspected otherwise.  

Andrea is a bit of google doctor and it drives me mad, however Emma was approaching 3 years old, and we were getting a little tired of sitting on medical waiting lists and not receiving any answers. We wanted to know why our monster wasn't talking and doing all the things that her two sisters had done? 

I was away with work when Andrea sent me a google link that explained symptoms and characteristics of people with Cornelia de Lange Syndrome (CDLS). I was shocked that the google doctor potentially found something that wasn't a complete exaggeration of the truth. Andrea also found a link to the CDLS Foundation's website and made contact.

Andrea was invited to attend their conference that was taking place in Guildford.  With me still working away, she packed up the car and went to meet with these complete strangers! Andrea met lots of friendly faces, Doctors and other professionals who looked at Emma and finally gave us a diagnoses. She has CDLS, a rare genetics syndrome that effects roughly 1 in 40,000 babies.

WHEN - 22 April 2018, I'll be running my little sox off to complete the marathon and to be honest I'm very scared.  I was talking to a runner who said the first time he ran it he was nearly crying at the 16 mile point!  The furthest I've ever ran was 14 miles and that wasn't by choice.  This is going to be breeze!!! :-(

Thanks for taking the time to visit my page.

More info can be found on the charity's website. http://www.cdls.org.uk/

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