A TEENAGER is begging to die every day because a minor fall left him with “suicide disease”, his mother has revealed.
Alfie Scriven, 15, is living with the condition that causes unbearable agony.
SWNSAlfie Scriven, 15, is living with Complex Regional Pain Syndrome (CRPS) — a poorly understood condition that has “snatched” his childhood away from him[/caption]
SWNSHis mother Hannah Walton, 46, who is his full-time carer, says it has left him begging to die every day[/caption]
He suffered what was thought to be an innocent injury whilst cross country running in Kingsmead, Taunton, in April 2019.
But despite rapid treatment of physiotherapy and painkillers at Musgrove Hospital, Somerset, his condition quickly deteriorated.
Doctors diagnosed him with Complex Regional Pain Syndrome (CRPS) three years ago — a poorly understood condition that has “snatched” his childhood away from him.
It leaves a person experiencing constant debilitating pain, often after a small injury.
His mother Hannah Walton, 46, who is his full-time carer, said: “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.
“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.”
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.
He has tried a variety of medications, including strong painkillers to dampen nerve damage and hydrotherapy
But Alfie, who has recently returned home from a five-month stay in hospital due to his low weight, remains in crippling pain.
SWNSHe became so unwell doctors were forced to perform an operation to have a feeding tube permanently placed in the stomach in order to feed him. Pictured: Alfie is hugged by his sister[/caption]
CRPS affects around 10,000 people in the UK and 200,000 in the US.
Medics do not know what cause it exactly but believe it is the result of the body reacting to injuries including bone breaks, sprains, burns and cuts.
Some experts believe a person’s genes could play a role in the response, which causes the body’s symptoms to malfunction.
It can affect an entire limb, even if if the initial injury was just to a winger or toe.
In some cases, it can spread across multiple areas of the body, as is the case with Alfie.
What are the symptoms of complex regional pain syndrome?
The pain of CRPS is usually triggered by an injury. But the pain is a lot more severe and long-lasting than would normally be expected.
The pain may feel like a mix of burning, stabbing or stinging. There may also be tingling and numbness.
You may have periods of pain lasting a few days or weeks, called flare-ups, where the pain gets worse.
Stress in particular can lead to flare-ups, which is why relaxation techniques and mindfulness training can be an important part of treating CRPS.
If you have CRPS, your skin in the affected area can become very sensitive.
Even the slightest touch, bump or change in temperature can cause intense pain.
You may hear this described in the following medical terms:
hyperalgesia – feeling more pain than usual to something that is painful
allodynia – feeling pain from something that does not usually cause pain, such as a light touch or pressure to the skin
Source: The NHS
After suffering the injury, Alfie and his family were hoping for a quick recovery but they quickly realised this was not going to be the case.
He was using crutches but the pain wasn’t going away.
Random red burn patches with swelling appeared across his foot, which subsided after a couple of weeks.
Alfie’s condition continued to deteriorate, and in December 2019, he was diagnosed with CRPS.
The mum-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. But now, he can’t even do the simplest things without being in excruciating pain.”
Aflie is unable to go to school and misses out on all the normal activities that his peers are able to do.
Mrs Walton said: “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.”
She uses a shower board to help him wash himself because he can’t bare the feeling of water on his legs.
He is unable to dress himself and can’t wear clothing that goes below his knees.
In May last year, he was hospitalised for five months due to his low weight reaching five stone.
He became so unwell doctors were forced to perform an operation to have a feeding tube permanently placed in the stomach in order to feed him.
Mrs Walton and her husband Paul, 49, from Surrey, Kent, are 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 designed to stimulate the nerves.
The couple are hoping the remedy, which costs £18,000, will put Alfie into remission and are fundraising £20,000 to bring him to the US.