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Weekly UpdatesByline: KATY SIMPSON
EVEN a hug or a handshake can be agonising for teenager Warren Agnew. The 19-year-old suffers from the same rare skin condition as Jonny Kennedy, who touched the hearts of millions in the TV documentary, The Boy Whose Skin Fell Off.
A charity was formed in memory of Whitley Bay-born Jonny, who died of his condition at the age of 36.
Like him, Warren, from Blyth, suffers from dystrophic epidermolysis bullosa - a rare skin condition which means the slightest amount of friction can cause his skin to blister. Sometimes just walking is so painful that Warren can do nothing but lie still for weeks at a time with his feet wrapped in bandages.
He even gets blisters on his gums, under his finger nails and once had a blister behind his eyeball.
There is no cure for the genetic illness, which he was born with.
But the outgoing teenager, who lives with mum Diane Boyden, 45, in Maple Crescent, is determined not to let his condition stop him leading a full life.
"At school it was hard because I couldn't join in sports," said Warren, whose stepdad Desmond Boyden runs the Kings Arms pub on Cowpen Road in Blyth.
"I had to wear special slippers and they used to call me names," he said. "But now I just think I have always lived with it, so I don't know what it's like to live without it."
Warren's skin first started blistering at just six weeks old.
But his condition was not diagnosed until he was two because it is so rare.
To his mum's horror, it seemed that just cradling, washing or feeding her baby caused him injuries.
However, the cause of the pain remained a mystery until a skin specialist at Newcastle's Royal Victoria Infirmary performed a biopsy on the blister tissue.
Diane said: "I used to get annoyed when people used to stare. They used to look at him like he was an alien.
"By the time he was a toddler, he had them everywhere, on his arms, his legs, on his nose.
"I was having to burst the blisters with sterile needles and that used to be heart wrenching for me, because he was crying out in pain.
"When he was a baby I used to have to soak him for ages to get the bandages off. They used to rip all the skin off.
"Once, when he was about six, he looked like he had been punched in the eye. I took him to hospital, and they said it was a blister behind the eye ball." Despite missing large amounts of school because of his condition, Warren has just finished his sixthform studies at Blyth Community College.
He hopes to follow his dreams of one day working in the music industry.
And now he is fundraising for the Dystrophic Epidermolysis Bullosa Research Association (DebRA).
A charity fun night will be held on September 30 at the family's Kings Arms pub, with a disco, bingo, bouncy castle and raffle.
Entry is free, and for more information call Desmond on 01670 369 046.
CAPTION(S):
INSPIRATION: Jonny Kennedy with his friend, model Nell McAndrew LOVING: Warren Agnew with his mum Diane; right, damage to the skin on Warren's elbows DETERMINED: Warren Agnew, who suffers from Dysrophic Epidermus Bolosa
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