Little boy who can’t be hugged and eats through a tube
THERE’S nothing more comforting than a parent’s embrace, but for young Billy O’Brien that simple act leaves him in pain. The 13-year-old has a rare condition — which has already claimed the life of his brother. But it’s one Billy won’t let defeat him.
NSW
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BILLY O’Brien is funny and loveable and his family and friends would love nothing more than to hug him, pat him on the back or even give him a high-five but, if they do, they could tear his skin off.
The 13-year-old has epidermolysis bullosa (EB), which means he can’t go for a run or even a walk without tearing his skin or blistering his feet.
Everyday tasks such as getting dressed or going to the toilet can hurt him and his mates just can’t touch him.
“They try to hug me, I say you can’t, I’ll get blisters and they hurt,” Billy told The Sunday Telegraph.
EB is an inherited condition where sufferers are born without one of the genes that helps glue skin together. It’s estimated to affect as many as 1000 children in Australia.
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Any friction or rubbing of the skin can lead to large blisters and loss of skin and, over time, scar tissue develops that can make movement difficult.
Billy’s much-loved big brother Jayden had the same disease and died from complications of EB at age eight.
For mum Rebecca, loving her boys with such a cruel condition has been tough.
Even a simple cuddle can hurt these cottonwool kids.
“Jayden was born in 2002 and when I was changing his nappy he had all these blisters on his feet,” Mrs O’Brien said.
“He had no skin in his mouth and he was diagnosed with EB and I had never heard of it.
“We could not pick him up from under the arms, his skin would fall off.
“Picking him up could cause blisters so we had to learn how to put one hand under his head and another under his legs, but, as a toddler, even learning to crawl caused blisters,” she said.
EB took its toll on Jayden.
He could only feed through a nasal gastric tube, developed acute renal failure and died of heart failure in 2011.
Billy was only six and was heartbroken to lose his best mate.
“It’s still raw with his brother, they were best friends and he still talks about Jayden every day,” Mrs O’Brien said.
Daily life for Billy is tough.
Every day he is bathed in vinegar or bleach to kill bacteria and wrapped like a mummy in head-to-toe bandages to protect him.
‘I don’t like it, the worst part is the pain,” Billy said.
It’s not something his mum enjoys doing, but knows it’s crucial to her son’s survival.
“It gets me, I don’t cry in front of him, but I do when I walk out. I’m just keeping him alive,” Mrs O’Brien said.
Billy needs to be fed through a gastric tube because even eating can damage the skin in his mouth.
Although he can walk, he needs a wheelchair at his high school at Warilla.
“He can walk but his feet and legs and even his shoes can cause blisters and his hands are closing up due to the scar tissue and it’s hard for him to hold a pencil,” Mrs O’Brien said.
As tough as life is for the plucky teen, he likes to be the funny kid and is well-liked, so much so the school had to make up a slide show to help other students understand that a display of affection could actually harm Billy.
“I really like meeting and talking to new people but there are some things that I need everyone to know. I can’t handle being hit, even a pat on the back or shoulders, or even a high-five. It’s not because I don’t like you, it’s because it will hurt me and my skin,’ the slide show reads.
“Because of my blisters I don’t like people staring at me. It makes me feel very uncomfortable.”
Because it is so rare, there is very little research into a cure or effective treatment.
Simone Baird, a family support officer with the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), lost her 17-year-old daughter to EB last Christmas.
The condition can cause skin cancer, renal failure and sepsis and sufferers rarely live beyond 30.
She said because EB is so rare, there is little research being done into a cure or effective treatment. DEBRA, a charity, does its best to lighten the load on families like the O’Brien’s.
“We support him with feeding supply, we fund that. We don’t receive any government funding and we are volunteer that rely on donors or anyone with a kind heart,” Ms Baird said.
To help families like Billy’s go to www.debra.org.au