Brave little boy has to be wrapped up like a mummy because the slightest touch could cause his skin to fall off
Meet the brave little boy who has to be wrapped up like a mummy because the slightest touch could cause his skin to fall off.
Luke Ridehalgh, two, from Highgate, London, has to be covered from head to toe in bandages because any pressure to his body will cause wounds similar to third degree burns.
Any friction will cause his fragile skin to shear off, leaving painful sores and large red blisters – even eating can damage the layers of skin on his tongue.
The adorable toddler suffers from recessive dystrophic epidermolysis bullosa (RDEB), which is a rare condition that changes the way the skin and tissue connects – affecting just 1,000 people in the UK.
Luke was diagnosed at birth, after having his DNA tested because doctors believed that the red raw and missing skin on his left leg had been caused by the condition.
Since then he’s defied doctors by learning to walk and despite cruel comments from strangers his parents Claire, 31, and Ben, 38, are amazed by his achievements.
Claire, a full-time mother, said: “His skin is so fragile that I have to wrap him up in bandages from head to toe just like a mummy to keep him safe and protected.
“When his bandages or gloves get dirty he gets upset as he sees the layers as a part of his body and a part of him.
“The damage is similar to third degree burns, as any friction rips off layers of skin and leave painful wounds beneath – because he’s in bandages people don’t realise he has a lot of wounds.
“If Luke trips over, any of his skin that makes contact with the floor will be sheared and stripped straight off.
“Once while using the baby walker he fell forward and his hit head on the floor – from that all the skin off of his forehead, cheek, neck and a lot of his face were wounded
“You have to learn how to change nappies in a way that won’t injure him, lift him differently and roll him more carefully so he skin wouldn’t tear off.
“I feel like I’m always wrapping him up in cotton wool, we can’t leave him to be a little boy and roll around with his brother Noah and permanently have to watch what he’s doing.
“If we didn’t cover him in bandages a lot of his skin would be damaged and he would be left with permanently open wounds from the damage, which also would leave him at risk of infection.
“Despite having such fragile skin Luke is very cheeky and boisterous, he’s constantly throwing himself onto the bed knowing full-well that he could hurt himself.”
When Claire was 34-weeks pregnant she was put on steroids to ensure her son would be healthy when he was born after being told he had a 50/50 chance of inheriting epidermolysis bullosa.
But after the birth it was discovered Luke had the dominant, life-shortening form of the condition which is caused by having two faulty genes in his DNA.
Claire said: “When he was born his one leg looked red raw caused by him missing a lot of skin and it also was so much smaller than the other foot.
“When we noticed the skin on his tongue was shredded and he was refusing to eat because it was too painful we knew it was RDEB.
“I was devastated when Luke was diagnosed with recessive dominant epidermolysis bullosa because it is the most severe form of the condition.”
Due to the damage on his left leg Doctors feared Luke would never walk, but after nearly two years of physiotherapy he is now able to walk unassisted.
Claire said: “His left leg was shorter and damage when he was born, but after physio he can walk on his own, the bandages have helped and supported his movement.
“In the past he’s been too scared to walk independently because he knows that if he falls his skin will fall off again – but considering he’s only two he’s very brave and we’re very proud of him.”
Luke now attends nursery but has to be careful when he plays with other children so that he doesn’t injure himself – often people stare and make comments about the wounds to his skin.
Claire said: “Because of the bandages he normally only has visible injuries to his head and neck, there are a lot of open wounds under his layers that people don’t see.
“When the public see him they think he’s scratched himself or has chicken pox, others stare and point at him which can be quite hard but I try to remain calm and educate anyone who asks me.”
To help raise further awareness of the condition the Ridehalgh family volunteer for the Sohana Research Fund (SRF), which aims to educate and to find a cure for all forms of epidermolysis bullosa by conducting gene therapy trials.
Sharmila Collins, founder of the SRF, said: “Time is not on the side of children and adults living with this terribly painful and cruel condition
“Every month wasted, is another month of pain for those suffering wounds that are like very severe burns.
“’It was lovely to meet Luke just before he started at nursery, learning to walk is such a worrying time, as even small falls can have such terrible consequences but his both Claire and Luke were smiling bravely at the prospect.”
For more information on The Sohana Research Fund visit www.sohanaresearchfund.org
To donate to The Sohana Research Fund: text the word SOHANA to 70500 to give £5 or donate mydonate.bt.com/charities/sohanaresearchfund
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