The family of a teen who often begged to die while suffering constant pain from a minor ankle injury now have fresh hope for his recovery.
Alfie Scriven, 15, is living with a condition so severe it’s been dubbed “suicide disease” - real name Trigeminal Neuralgia - after living with unbearable agony.
The teen first sustained what was thought to be an innocent injury whilst cross country running Kingsmead, Taunton, in April 2019.
Despite rapid treatment of physiotherapy and painkillers at Musgrove Hospital, Taunton, Somerset, his condition quickly deteriorated.
Doctors diagnosed him with Complex Regional Pain Syndrome (CRPS) three years ago - a poorly understood condition where a person experiences persistent severe and debilitating pain - often after a small injury.
Alfie quickly lost the ability to walk and eat, and even the slightest touch causes him intense pain after the condition spread around his body.
Despite trying a variety of medications, including strong painkillers to dampen nerve damage and hydrotherapy, Alfie, who has recently returned home from a five-month stay in hospital due to his low weight, remains in constant agony.
His mother, Hannah Walton, 46, and her husband Paul Walton, 49, from Surrey, Kent, are desperately seeking help for fundraising so they can take him to the US for a treatment called VECTTOR.
VECTTOR treatments are a form of electro-stimulation based upon acupuncture, physiology, cellular physiology, and anatomy designed to stimulate the nerves to produce certain neuropeptides essential for optimal functioning of the body.
The couple are hoping this remedy, which costs £18,000, will put Alfie into remission and are fundraising £20k to bring him to the US for the treatment.
Hannah, Alfie’s full-time carer, said: “My son has had his childhood snatched away from him.
‘’Every day is something new to worry about.
“At first I thought it would just be a few weeks, but as days turned to years, now I’m not sure when it will end.
‘’It was such an innocent injury; I can’t believe how we’ve ended up here.
“I wish I could siphon away the pain for Alfie, I feel so helpless sometimes.
“I just hope with this new machine Alfie can get better.
“He will repeat that he wants to die with every feed.
“As a mother its heart-breaking to know that your son doesn’t want to be here.
“But I understand that the pain must be excruciating.
‘’No child should be thinking about ending their own life.’’
After sustaining the injury, Alfie and his family were hoping for a quick recovery - but they quickly realised this was not going to be the case.
Hannah said: “We thought he’d be better in a few weeks, but it just kept getting worse.
“Alfie was using crutches, and the pain wasn’t going away.
“He had random red burn patches with swelling across his foot which would subside after a couple of weeks.”
Alfie’s condition continued to deteriorate, and in December 2019, he was diagnosed with CRPS.
Hannah, a mother-of-four, said: “It’s been heart-breaking to watch him suffer.
“He used to be so full of life, loved sports, and was doing so well in school.
‘’Alfie would be doing GCSEs right now, so he does two hour slots of education every week.
‘’The pain is across his legs, and stomach. But now, he can’t even do the simplest things without being in excruciating pain.
“He’s unable to go to school and misses out on all the normal activities that his peers are able to do.
‘’He’s sixteen and he loves sport, he started playing basketball and hockey.
“Everything got taken away from him.
“He listens to his friends go bowling, and cannot join them.
‘’He spends most of his time in bed, and even the smallest tasks exhaust him.
‘’We use a shower board to help Alfie shower because he cant get his legs wet.
“Alfie can dress himself, but I use to have to put him on toilets. He is restricted to loose clothing that don’t go down to his knees.
“He suffers from depression, and has a lot of ups and downs.
“Relentless pain causes him to cry, and I can’t take it away, it’s incredibly upsetting.’’
In May 2022, Alfie was hospitalised for five months due to his low weight reaching five stone.
He became so unwell medics were forced to perform an operation to have a feeding tube permanently placed in the stomach in order to feed him.
Hannah said: “Alfie would beg and pleaded for the pain to stop, but if they didn’t he would die.
‘’I feel helpless that I can’t take away the pain away and the depression.
“He has said that he wants to die- it’s the worst thing for a parent to have to hear.’’
Hannah and Paul, a mastic man, are parents of three other children, Summer, 17, Finley, 11 and Indi, seven.
Hannah said: “When Paul takes the kids out, I have to stay in with Alfie, and he has to watch as his siblings go off and have fun.
“It’s just really tough to watch a 15-year-old trapped.
“I wish I could take away the pain and get him better.”
In October 2022 Hannah found out about VECTTOR, on a Facebook group CRPS mums and a post mentioned the treatment.
“It is not clear if the treatment will allow Alfie to walk again, but it has the potential to put him into remission and eliminate his pain,’’ she said.
“This could be a life-changing treatment for Alfie.
“We’re desperate to get him to America.
“It could mean the difference between living with constant pain and being pain-free.
‘’Even if he can’t walk again, just being free of that pain would give him back so much quality of life.
‘’I can’t even put into words what that would mean for us.
“We’re just so grateful for any help we can get.
“We know it’s a tough time for everyone, but if you can spare even a small donation or share our story to raise awareness, it would mean the world to us.
“We just want our son to be able to live a normal life and not be in constant pain.
“Please, help us give Alfie a chance to be a kid again.”
