Teen from Somerset with 'suicide disease' hopeful of miracle US treatment
Watch Ben McGrail's report.
A Somerset teenager who lives in constant pain hopes special treatment in America will change his life.
Alfie Scriven lives in Cotford St Luke, near Taunton, and suffers from complex regional pain syndrome (CRPS). It is a poorly understood condition which leaves him in severe pain all the time.
The condition is sometimes nicknamed 'suicide disease' because sufferers often say they would rather die than continue to experience the intense and prolonged pain.
There is no cure for CRPS but a doctor in Texas has created a treatment which he says can send keep it in remission. Donations totalling over £23,000 have been raised to allow Alfie to travel to the US in late March
Alfie was a normal, healthy 12-year-old when he injured his ankle during a school cross-country run. The pain, however, never stopped and only got worse.
He said: "It's like someone's almost poking burning hot needles just into my legs and into my back all the time and I kind of have to stop myself from screaming all the time because it just hurts every second of every day. I don't remember what it's like to not feel that pain."
Alfie doesn’t wear anything on his legs because even the slightest touch is excruciating. He can only be fed, watered and receive medicine through a tube directly into his body. The four walls of his bedroom is all he sees most days.
Hi mum, Hannah Walton, said: "He sees his peers going out, playing football. He can't go to school. It's heartbreaking.
"He doesn't want to live with this forever. He says to me: 'I don't want to be here. I don't want to be here. I don't want to live like this.' To hear your child say something like that is just the worst thing you can hear."
Watch: Information video about the Vecttor system
But, for the first time, Hannah now has hope for her son. On the kitchen calendar is the date she and Alfie travel to the US for the specialist treatment - funded by over £23,000 in donations.
The Vecttor therapy system isn’t available in the UK yet. It is a machine which electronically creates chemicals that the body doesn’t make enough of to help stop pain. The system has helped thousands of people across the world with chronic conditions.
It was developed by Dr Donald Rhodes, who told ITV News: "I've seen all the different parts that Alfie is presenting just never all of them at the same time. So his is a very complicated case.
"I am confident that I will get him better. I want 100%. Patients come in asking: 'Just get me 50% better I'll be happy.' I always tell them: 'If you're only 50% better I've failed'."
Alfie and Hannah are hopeful that he may now have a more positive future. Alfie said to his mum: "We're like, 'oh, pancake day' or something like that. You'll say, 'oh, next year I'll make you a pancake.' Yeah. Next year comes and that doesn't happen. But next year it might. And that's the first year I think I've actually felt like that might be possible."
Alfie is just like his peers in so many ways - he loves reading, he loves animals, particularly penguins - but he’s lost years of his life to this little known condition. But now this family has hope that he will get back a quality of life he so deserves.