Darlington family to run Manchester 10k for boy with very rare condition
They are fundraising for three year-old Connor Murphy
A Darlington family is running the Manchester 10k tomorrow for a boy with a very rare condition.
Three year-old Connor Murphy has been identified as having HIVEP-2 and he is the only person in the UK with it and one of 16 worldwide.
His family is looking to raise money to help adapt their home and allow him to continue to 'live his own normal life'.
Connor's dad, Ben, said: "We've set the goal for now at £10,000 because that's just for equipment we need to support Connor around the house, and to pay for things like therapy and supporting Connor in every day life.
"In this house, we've ended up buying ramps for his wheelchair, we've bought equipment so that Connor can get up and down the sofa, we've got him a bed that was on the floor so he can crawl in and out of bed himself, it has rails around it so it can protect him from falling out and injuring himself. We have some thicker matting.
"He crawls everywhere on his knees, he gets bruises quite a lot so we're even buying creams for him to repair his skin, because his skin is always quite damaged, sore and bruised from crawling and even walking on his hands, it's always quite rough from crawling on the floor and the tarmac outside, so there's just an endless list.
"This isn't an illness that's going away. He's going to live with his for the rest of his life and we're going to be living with this for the rest of his life as well. We're raising the money for now and for the future because when we move into our next house, which will be our own hopefully, we'll need to buy all these adaptions again ourselves so Connor can have his own normal life."