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A schoolboy who was diagnosed with a debilitating nerve condition has begged his mother to get his leg amputated to ease his suffering and told her he ‘wanted to die’.

Dillon Wilford, 10, was a ‘happy and healthy child’ until he woke up in November 2021 with a limp and ‘severe pain’ in his right leg.

After three months of waiting for a diagnosis, doctors said the youngster was suffering from Complex Regional Pain Syndrome (CRPS), a condition that causes extreme discomfort that does not ease. 

The condition is often referred to as ‘the suicide disease’ because there is no cure and limited effective treatments – even the slightest touch to the affected area causes severe pain.

Dillon, of Sharples, Greater Manchester, has subsequently had to stop going to school because of the extreme pain and even begged his mother, Melanie, 47, to have his leg ‘amputated’.

The single mother-of-four is now trying to raise £100,000 to take Dillon to America to get specialised treatment that’s not available in the UK.

Ms Wilford said: ‘One day he was eating a strawberry one tiny seed fell off and hit his leg and he screamed. If he gets a cat hair on his leg, he screams.’ 

Dillon Wilford, 10, was a 'happy and healthy child' until he woke up in November 2021 with a limp and 'severe pain' in his right leg

Dillon Wilford, 10, was a ‘happy and healthy child’ until he woke up in November 2021 with a limp and ‘severe pain’ in his right leg

The NHS offers patients who are suffering with the condition education and management, physical rehabilitation, pain relief and psychological support. Pictured: Dillon Wilford

The NHS offers patients who are suffering with the condition education and management, physical rehabilitation, pain relief and psychological support. Pictured: Dillon Wilford

She added: ‘It’s 12cm above his knee all the way down to his feet, his right leg.

‘This is hell, absolute hell. It’s like a life sentence for a child. In America they do cut price amputations in the US for people with CRPS.

‘I’m speaking to one woman who had to have her arm removed as the pain was that bad.

‘He’s begged me to have his leg removed. He told me he wanted to die. It’s horrific to watch my cheeky boy end up like this. People need to know how bad it is. For a little boy who has this, he hasn’t been to school in three months.’

The NHS offers patients who are suffering with the condition education and management, physical rehabilitation, pain relief and psychological support. 

Ms Wilford, a student nurse, and her daughter Maddison, 24, have been helping to care for the in-pain schoolboy

Ms Wilford, a student nurse, and her daughter Maddison, 24, have been helping to care for the in-pain schoolboy

Ms Wilford said: 'It is known as the suicide disease. It affects their mental that badly. He couldn't use his crutches anymore as he was in hospital bed bound a lot. I was worried he'd waste away to nothing'

Ms Wilford said: ‘It is known as the suicide disease. It affects their mental that badly. He couldn’t use his crutches anymore as he was in hospital bed bound a lot. I was worried he’d waste away to nothing’

How is Complex Regional Pain Syndrome caused? 

Complex regional pain syndrome (CRPS) is a condition that causes extreme discomfort that does not ease.

It usually affects just one arm or leg following an earlier injury, such as a fracture or sprain with no nerve damage, or nerve damage to a limb.

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CRPS’ exact prevalence is unclear, however, a study claimed up to one in 3,800 people in the UK develop the condition each year.

What are the symptoms?

Pain is the main symptom, which may be burning, stabbing, stinging or throbbing.

The affected limb is usually sensitive to touch, with even clothing causing agony.

CRPS also causes swelling that can lead to stiffness, limb weakness and jerky movements. Joints may also appear redder or warmer than usual.

What causes CRPS?

CRPS’ cause is unclear but is thought to be due to the nerves in the affected area becoming more sensitive, which may change the pain pathways between the limb and the brain.

What are patients’ treatment options?

There is no one treatment. Therapies aim to maintain movement through rehabilitation and pain relief.

Source: Versus Arthritis

Ms Wilford, a student nurse, and her daughter Maddison, 24, have been helping to care for the in-pain schoolboy.

She said: ‘We’re raising 100k for him to send him to America, a clinic in Arkansas.

‘It includes light therapy, oxygen treatment, they do things that they don’t in this country look at it his condition.

‘It’s a 16-week treatment and it’s every single day. They do over a 120-blood tests – they haven’t even tested his blood test over here. In the UK they don’t do anything like that.

‘There’s no known cure for CRPS but they can get people into remission. Once you’ve got CRPS you’ve got it for life. Once you go to America, they get you walking again.

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‘The people I’ve been speaking to in other countries don’t seem to get it back after they’ve had the treatment in the US.

‘It was four weeks between physio appointments and that isn’t on.

‘I want to raise awareness for it. There was no trigger for it. It was completely random, he woke up one morning and he was limping. That night he screamed all night horrifically. The next day I took him to A&E and they said there was nothing wrong with him.

‘My kids call me paper towel mum but the screams were horrific. It’s only by luck that we saw a different doctor who asked me to tell the whole story and said I know what it was.

‘We asked for referrals to Manchester Children’s Hospital but it was refused as they didn’t do anything about it.

‘They thought he might lose his leg as there was no blood flow to his leg. He was put on morphine and he had a really bad reaction to it.

‘It is known as the suicide disease. It affects their mental that badly. He couldn’t use his crutches anymore as he was in hospital bed bound a lot. I was worried he’d waste away to nothing.

‘He screams every night. The first sound I hear when I wake up is my son screaming. He screams all the time. He has to wear shorts.’

To donate to the fundraiser, please click here.  

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