A DODWORTH toddler’s rare condition - which affects just a handful of people in the country - will be at the centre of a swimming instructor’s awareness campaign who is also aiming to raise cash for charity.
Joel Russell, swim school manager at Sprint Swim Academy in Mapplewell, is preparing to take on the Tough Mudder course next month.
The course, which is a popular fundraiser, is returning to Broughton Hall in Skipton and is 15 kilometres long with more than 20 obstacles for participants to overcome.
The 24-year-old is raising money for the Phelan-McDermid Syndrome Foundation after learning about the grandson of Jill Goddard, one of his colleagues.
Her grandson George, who turns three next month, has the disorder which is caused by the deletion of DNA or a gene change in chromosome 22 in a person’s body.
Joel said: “Me and my mates decided we were going to do the Tough Mudder course.
“Jill told me about her grandson George, and I’ve been teaching him to swim, so I mentioned if it would be okay for me to help out with raising some money for him and the foundation.
“I’m lucky enough to not have anyone in my family who suffers from anything like he does, so giving back felt the least I could do.
“I’d never heard of the condition before like so many people, but last time I checked we’ve reached £3,600 so the fundraising is going great.
“I had a call from the Phelan-McDermid Syndrome Foundation as well, who said they’ve been struggling for funds, so all the money we raise will help a lot.”
Only an estimated 340 people have the condition in the UK, with symptoms including absent speech, development delays and low muscle tone.
There is currently no cure for the condition, with most treatment aimed at improving the life quality of sufferers.
Jill added: “George was diagnosed around Christmas time after we noticed he wasn’t crawling properly amongst other things.
“We’ve pushed everyone really hard to get us to raise as much money as possible.
“My son is doing a charity run for the hospital this month, and I asked if he could raise money for George, but the hospital have their own charities, so I started telling other people about it.
“We’ve got a raffle going on in Silkstone where my husband plays golf that will help raise money, Jeremy Clarkson has donated a barrel of beer for us to sell as well.
“Everyone has pushed really hard and we hope to touch £5,000 soon.”
