LIFESTYLE

Inspirational 'Butterfly Boy' Raises £65K For Rare Condition Which Makes 90% Of Skin Blister And Peel At Slightest Touch

10/08/2015 11:11 BST | Updated 10/08/2015 13:59 BST

Most teenage boys love to run around and play – but ‘Butterfly Boy’ Jonathan’s skin is so delicate it falls away at the slightest knock.

Fourteen-year-old Jonathan Pitre, from Russell, Canada, lives in constant pain as 90% of his skin blisters and peels from his body - making it look as if he has third degree burns.

The excruciating pain is so bad he has constant headaches and nausea, and often spends nights awake in agony.

Helpless mum Tina Boileau, 35, has to watch her son writhe in pain as she wraps him from head to toe in bandages to ensure he doesn’t get infections.

butterfly boy

Jonathan has one of the most severe cases of Epidermolysis Bullosa, a condition which means his skin can blister and tear at just the slightest touch.

Children with EB are known as ‘butterfly children’ due to their fragility – and there is no cure. But despite Jonathan’s painful condition, he is inspiring those around him with his upbeat outlook.

He is the ambassador of the EB charity DEBRA Canada and has raised more than $100,000 (£64,000) to find a cure.

And he even plans to make a trip to see the Northern Lights to honour his friends who have died.

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As a child Jonathan was active and sporty, but his condition worsened over the years.

His skin is covered in wounds, which are susceptible to skin cancer, and he must have regular surgeries to open up his hands and fingers that can fuse together with layers of skin.

The severity of his condition has left Jonathan in a wheelchair. Even the simplest tasks – like holding a knife and fork or buttoning his shirt – can be agony.

And now, while most boys Jonathan’s age spend their days kicking a football around and playing with their friends, Jonathan is in a constant state of pain.

He said: “Every day, even when I’m sleeping, I feel pain. I have that little part of me that’s conscious when I sleep and sometimes I wake up because it hurts so badly.”

As a child Jonathan drew on unlikely inspiration to cope with the debilitating pain.

He said: “As a kid I loved Pokémon, and back then I would imagine myself as one of them and I would defeat EB with all their powers.”

Every other day Jonathan goes through a gruelling three and a half hour regime to keep his sores clean and prevent infection.

Jonathan soaks in a bath tub, before Tina removes the bandages then pierces and drains his blisters to stop them enlarging.

After he is re-bandaged Jonathan takes four medications including morphine - but the pain relief is never enough.

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Meet the Butterfly Boy

The family, which includes little sister Noémy, 13, have adapted their lives to revolve around Jonathan’s care - with Tina forcing herself to take care of the raw damaged skin as her son screams in pain.

“It’s hard work seeing your child in pain every day,” she said. “You know you’re hurting him and you can’t stop, you have to keep going.

“Every time a wound doesn’t heal, or there’s a bigger wound, or it gets deeper, you’re always concerned the cancer is going to get in there.”

Jonathan’s life has changed since his EB worsened. He said: “Its very hard to make friends with people just because of the everyday routine.

I would never be able to hang out with them; the only time would be at school.

“At lunch I can’t go in the cafeteria because there are too many people and too many chances to get hurt so it is very hard to make friends.”

However Jonathan, who has had EB since birth, has an inspirational attitude towards his condition.

As well as trips around the US to attending sporting events and public speaking on behalf of the charity, Jonathan plans on journeying to Alaska to witness the spectacular Northern Lights.

The dancing lights hold a special meaning to the admirable youngster as they represent the friends he has met who have sadly lost their fight with EB. “I only have a life-span of 25 years - I’ve already lived over half my life,” said Jonathan.

“It gives you a new perspective, think of what you do have, think of all the happiness around you, think about all the love. “Every day is a battle and every day is a battle won. “This is me, it’s how I’m supposed to be so I deal with it.”

The NHS estimate that one in every 17,000 children born in the UK will have EB. In the UK, there are currently an estimated 5,000 people living with it.

More inspirational stories like Jonathan's feature in the new series of Body Bizarre, Thursdays at 9pm on TLC.