Team Tom
Team Tom - Half Marathon
Fundraising for Devon Freewheelers
Story
Tom’s story:
10th May 1987 - 14th April 2020
Tom Coates was the ultimate optimist.
Even after his diagnosis of Kufs he would say, ‘There’s only one of me’
He was one of a kind and his joyful spirit touched all who knew him.
Tom had the biggest goofy grin and when you were the recipient of one of his smiles, he would light up your day.
He always wanted to make others happy and nothing would dampen his spirits, as Tom said, ‘No rain, no rainbows’
Tom started falling at 19, and brain scans found fatty deposits in his brain. Later him and his sister were diagnosed with KUFs – they were the first with the diagnosis in the UK.
KUFS syndrome: What is it, and what are the symptoms?
KUFS, otherwise known as neuronal ceroid lipofuscinosis (ANCL), is a genetic disorder.
The rare condition is caused by changes in particular genes that are critical in helping the body to function.
With these mutated genes, a person's organ systems, including the brain, can be affected.
Patients can therefore suffer from epilepsy, dementia, dysphasia and limited mobility.
There are only 32 known cases of Kufs in the world.
We will be fundraising for Devon Free Wheelers:
'Devon Free Wheelers are such great people and always had a smile on their faces and were incredibly kind. They were a brilliant help to us, getting Tom his injection meds, going to different pharmacies and the hospital. They even brought an emergency oxygen tank on a bike when we had run out.'
What are we doing?
The Great West Run might be cancelled, but Team Tom will run on.
A group of 17 are running a half marathon on Sunday 23rd May – we have been encouraging one another throughout the lock downs to get to a point where we can all run the distance of a half marathon. Some fast, some slightly slower but all challenging ourselves to do our best and run in Tom’s memory.
Fingers crossed, we will be starting at Topsham Rugby club and running 13.1 miles – coming back together at the end to raise a glass to Tom with his parent’s. (Covid regulations permitting – alternatively we will all be running the distance from separate locations)
Thank you in advance for your kindness in donating
Members of Team Tom:
Ady Dayman
Andrea Williams
Andrew Hattersley
Andy Parker
Nigel Parker
Darren Goff
Gina Goff
Emily Hurford
Howard Parker
Jill Malpass
Jim Bee
Jo Crocker
Naomi Dayman
Olly Bycroft
Tasha Porter
Richard Parker
Grace Parker