Leighton Barker, now 22, from Thurnscoe, was born on January 30, 2000 - but three weeks later his parents found a lump on his neck.
After being rushed to Barnsley Hospital’s accident and emergency department, who then referred him to Sheffield Children’s Hospital, he was diagnosed with a sternomastoid tumour - a benign mass in the neck.
Leighton’s mum, 43-year-old Lyndsey Carsley, said: “During this time Leighton had found it difficult to turn his head away from the side where the tumour had been removed so his left side of his head was totally flat.
“On December 20, 2000, we had what we thought was a routine appointment - it was at this point we were given the heartbreaking news that our son has Hurler’s Syndrome.”
Hurler Syndrome is a genetic disorder that results in the build up of large sugar molecules that can damage the nervous and skeletal systems, heart and eyes.
“The prognosis was devastating - my gorgeous boy had a life expectancy of 10 years old,” she added.
“Fast forward to February 2001 we had received an appointment to go to Manchester Children’s Hospital.
“We discussed options which were basically to let him live his life and he would die in childhood or he could have a bone marrow transplant which would hopefully - not definitely - give him a ‘normal’ life expectancy.
“We said yes straight away I had to give him a chance I couldn’t give up and just wait for him to die.
“We were put on the Anthony Nolan list and then it was a waiting game until a match was found.”
The family eventually received the call that a match had been found and Leighton was admitted for a full week of tests - something he still has every year.
Lyndsey said they expected the worst for the bone marrow transplant but Leighton ‘sailed through it’.
There was nothing untoward until he was admitted to Barnsley Hospital that December.
He went into respiratory failure and was rushed to intensive care at Leeds General Infirmary.
Leighton was in hospital for three weeks and he ended up on oxygen for the next eight years until he was able to to breathe in air again in 2008.
As time has progressed he’s had eight plates fitted in his knees to help the shape - and he managed to go home the same day as the surgery as he ‘stubbornly’ managed to walk himself up two flights of stairs.
However, Lyndsey says his situation has now deteriorated and his mobility has got worse - prompting 30 people to cycle from Goldthorpe to Oakwell and back tomorrow in a bid to raise £5,000 for a stairlift at the home as his dad has been carrying up the stairs.
“We went to Portugal in September and from coming home his health deteriorated his mobility has gone to nearly nothing and he was pale, lethargic and just not himself at all and couldn’t even walk upstairs to use the bathroom,” she said.
“We were told when we had the downstairs bedroom done that we would never get funding for anything else for Leighton we had the maximum funding allowed.
“We feel blessed that the fundraiser is happening.”