Published: 00:01, 24 August 2015
“I tried to play football with my son and I just couldn’t kick the ball. I fell against the goalpost and cried for hours.”
For most dads this is a nightmare scenario but it is one which 37-year-old Wayne Deane faces every single day.
The former Abbey School pupil was diagnosed with primary progressive multiple sclerosis (PPMS) in January 2012 and is now wheelchair-bound.
Accepting life with this devastating condition has been tough for the father of two but his partner and full-time carer, Katie Scott has given him a new glimmer of hope.
She has spent days and even weeks researching the condition and has found a innovative new treatment abroad to give Wayne, of Charles Drayson Court, a better quality of life and an improved chance of a longer life with his sons Lars, 18, and 12-year-old Brendan.
But it comes with a £30,000 price tag.
Many people have heard of multiple sclerosis but there is little information about PPMS, an incurable condition where sufferers have a lot more difficulty walking, working and doing everyday things we all take for granted.
"I really wanted to get my younger son into football and when he started playing I tried to play with him, but I couldn't kick the ball" - Wayne Deane
Differing from multiple sclerosis, there are never any periods of remission.
The treatment Katie discovered, hematopoietic stem cell transplantation (HSCT), is only currently available in Russia, Israel, Mexico and the Philippines as scientists in the UK continue to experiment.
Despite a number of risks, the MS Trust, based in the UK, has found that HSCT can reduce inflammation, reduce the number of relapses and slow down the progression of disability.
Wayne said: “When I was first diagnosed I knew nothing about MS, and didn’t know how to feel about it.
“Now, I still don’t know how to feel about it, really.
“Life has changed so dramatically. I used to have a football team, I used to play golf, I used to go out with my friends and play with my kids. I used to work.
“Now I have to use a wheelchair. I get up, sit on the sofa and watch television, occasionally go out in my wheelchair – but there is not much I can do.”
Wayne, who had to give up his job working for the London Underground, has suffered loss of grip in his left hand, worsened sight and memory, and has less capability to read and write.
He is clinging to the hope that he will be able to fund HSCT, inspired by success stories where people have gone from being bed-bound to running around with their kids.
Wayne added: “I really wanted to get my younger son into football and when he started playing I tried to play with him, but I couldn’t kick the ball.
“I fell against the goalpost and cried for hours.
“Knowing there is nothing they can do is like a kick in the teeth. You’re just left to get on with it because there is nothing else doctors can do.
“It’s a lonely place.”
Research Communications Manager at the MS Society Dr Sorrel Bickley said: “Treatments to stop the progression of MS are urgently needed and stem cell therapies are a promising area of research, but as yet there are no stem cell therapies licensed anywhere in the world. This means they haven’t yet been established as safe and effective.
“The stem cell treatments being offered currently in various clinics around the world do therefore need to be seen in this light: they may have some benefit, but this is unproven and the risks are significant.
"Unless the treatment is being offered as part of a properly regulated clinical trial, we would urge caution - but clearly it is ultimately down to personal choice.
“The good news is that momentum in this area of research is building and we're eagerly awaiting the results of further clinical trials.”
More by this authorBess Browning