By Rebecca Lewis @RebeccaSLewis


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Videographer / Director: George Harrold
Producer: Jack McKay, Chloe Browne
Editor: Sonia Estal, Ian Phillips

Brave boy: Jonathan spends his day in agony because of his rare condition

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

Fourteen-year-old Jonathan, 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.

Light touch: Tina carefully bandages Jonathan's wounds

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. 

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.

Happy family: Noémy, Tina and Jonathan have been through a lot together

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.

Tina squeezes out ointment to use on the bandages

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.

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

Hard work: Tina has no choice but to watch her son suffer

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.

Inspiration: Jonathan has raised more than £64,000

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.”

Jonathan finds it difficult to sleep because of the constant pain

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

He said: “As a kid I loved Pokémon’s, 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 grueling 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.

Jonathan's condition has grown worse over time
As a kid he was well enough to play sports

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.

Jonathan is almost completely covered in bandages to protect his delicate skin

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.

Some of Jonathan's wounds are susceptible to skin cancer

“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.

Jonathan still goes to school and tries to live life as normally as possible

“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.”

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