Butterfly boy – Two-year-old boy with a genetic condition nicknamed the Butterfly Disease has such delicate skin that he can’t wear shoes
A two-year-old boy with a rare genetic condition nicknamed the Butterfly Disease has such delicate skin that he can’t even wear a pair of SHOES.
Brave Jackson Rochford is left with painful blisters and his fragile flesh tears whenever he changes clothes or feels the slighest touch.
The tot can’t wear jeans or any rough materials because they make his skin peel and chafe.
And his condition is so bad that he can’t wear any shoes so has to be carried by his mum Kerry, 34, whenever they go outside.
Little Jackson suffers from the rare genetic condition epidermolysis bullosa (EB) which affects just one in 14,000 people in the UK.
Patients are known as “Butterfly children” because of their fragile skin and there is currently no cure with most sufferers having a life expectancy of just 30 and most victims dying of skin cancer.
Yesterday (Wed), Jackson’s mum Kerry told how she often gets funny looks and comments from strangers in public who notice the tot’s sores and see he hasn’t got any shoes on.
The single mum-of-seven said: “People do stare, especially in cold weather when Jackson doesn’t have any shoes on. They say his skin is as fragile as a butterfly’s.
“I get a lot of comments. When people see him without shoes I hear them say things like: ‘You’d think his mother would put some shoes on his feet, it’s freezing out’.
“I feel like turning round and telling them there’s a good reason for that, but I just smile sweetly back at them. They don’t understand.”
Kerry also wants more to be done to raise awareness about EB because she feels most people have no idea about the condition and what it’s like to live with it day to day.
She added: “If a child who doesn’t have the condition falls over, they’re fine. But Jackson’s skin is so fragile and it tears off. It’s like tracing paper. If he bumps into something he comes out in a great big blister.
“When I take him outside, I dress him in soft cotton and put a lot of padding inside his clothes. I have to carry him everywhere and shoes are a total no-go.
“He loses toe nails easily and he can’t have everyday plasters because they peel his skin.
“He also sees a specialist dentist at Birmingham Children’s Hospital because his condition affects his gums and his mouth bleeds each time he cleans his teeth which is a painful experience for him.
“I dread to think about him starting school. I have nightmares about it. Even holding a pencil will give him blisters. I don’t know how we’re going to manage that. I don’t want to think about it right now.
“One time I took him to A and E because his toes were infected and the nurses and doctors didn’t know what EB was and they asked us how it should be treated. They didn’t even have the correct dressings.”
Jackson’s sister Lily-Rose, 11, has now written a song about her brother to try and raise awareness about the rare condition.
The schoolgirl said: “What he’s got isn’t nice. People stare and think something bad has happened and when they see him with no shoes they think my mum is a bad mum, but I want to show them she’s not.
“I love to sing. It’s my favourite hobby. I sing about my brother’s condition and how I hate it when I see him cry. I also sing about nice things, like how he dances.
“When we go to playgrounds I always make sure the other kids don’t knock him over. And I make sure he’s safe on his bike.”
Proud mum Kerry added: “All my children have been really good but Lily-Rose just wants to make everybody aware of Jackson’s condition. She Googles it and, although she reads all about the worst-case scenarios, she’s really positive.
“Lily-Rose adores him and will spend hours looking after him.
“I’m massively proud of her, she’s done amazingly well. It’s been hard for her losing her dad and shortly after that we found out Jackson had this genetic illness.
“She said we needed to tell people about it because she’s tired of people staring at her brother and judging me.”
* Only 50 in a million children are diagnosed with EB at birth. It can be passed on through genes or can occur spontaneously at conception.
There are three main types of the disease – EB Simplex, Dystrophic EB and Junctional EB – and more than 30 subtypes, all with varying degrees of severity.
EB charity DEBRA estimates there are currently 5,000 people living with the disease across the world.
In the most serious cases, patient life-expectancy can be as low as 0-6 years but other sufferers can live for a healthy life-span and there is currently no cure.