Boy, 5, with ‘butterfly skin’ suffers third-degree burns with every small bump

Boy, 5, with ‘butterfly skin’ suffers third-degree burns with every small bump


A five-year-old boy is left with third-degree burns every time he bumps himself due to a rare condition which means his skin is as fragile as a butterfly's wing.

Jamie Cockeram was diagnosed with recessive epidermolysis dystrophic bullosa (RDEB) at birth.

The rare inherited skin disorder means his skin is so delicate a bump or graze rips three layers off immediately.

Before school every day, Jamie's parents Jenny and Simon pierce any blisters with a sterile needle and wrap him in bandages.

His parents have spent years fundraising for medical research in the hope that one day their son's pain will stop.

Simon, 46, an IT security expert, said: "He fell over on the grass while playing the other day, which is normal for children.

"But this caused Jamie a big blister on his knee.

"We had to give him morphine and take him home to clean it up. He deals with this on a daily basis.

"Jamie has a permanent supply of morphine. When he is in so much pain his little body shakes uncontrollably."

Jamie also suffers from corneal abrasions, which means his eyes are hypersensitive to light.

Curtains and blinds must be closed there, or he must wear his prescription sunglasses indoors.

Simon, who also has two grown-up sons, Daniel, 19, and Lewis, 17, added: "Jamie has to keep his eyes closed even when the curtains are closed as it's still too bright for him.

"He has to play in the dark with his eyes shut tight.

"Those make for interesting days educating and entertaining him at home."

The family, from Worcester, are taking part in a 10K charity run on September 15 to raise money and awareness to help combat RDEB.

Mum Jenny, a tax accountant, said: "When he was old enough to realise he was different, he said to me 'Mummy I've got butterfly skin so when I fall over I get blisters but it's ok because I'm a happy boy.'

"That just broke my heart.

"Simon and I know how to handle him and know how to hug him without causing too much damage.

"For close family and friends hugging can be tricky and they have to be really gentle.

"Picking him up was a problem when he was younger as the skin under the armpits were so sensitive it would blister at the slightest pressure.

"We had to adapt by scooping him up under his bottom instead.

"As a newborn we had to hold him on a special pillow to reduce the risk of causing blisters as we didn't know how fragile his skin was.

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