'Butterfly Child' with rare condition gives hope to thousands
An Ontario teen known as a "Butterfly Child" for a condition that leaves his skin as fragile as butterfly wings is raising awareness about his illness, and inspiring others with his struggle.
Jonathan Pitre, a 14-year-old from Russell, Ont., suffers from Epidermolysis bullosa, an incurable disease.
Blisters cover his body and leave his skin a raw, open wound. Simple tasks that most people take for granted are difficult, including sleeping, walking and eating.
"Really, everything is just a challenge," Pitre told CTV News. "Everything that you guys take for granted, for me it is a headache every time."
He has wounds and scarring in his mouth and throat that can cause food to get stuck. However, so far he has managed to get by without a feeding tube, unlike so many others with EB.
"I can't live my life to the fullest, but I do try that, I can tell you," Pitre said. "I don't let that get me down."
His wounds are so deep that they take a long time to heal, and EB patients cannot produce a protein that binds the skin together. So his skin becomes "a chronic wound," as his mother, Tina Boileau says, and is always trying to heal.
Pitre requires constant care from his mother, who spends hours carrying him through their home, piercing the blisters that cover him, and bandaging his limbs. Bathing him and re-dressing his wounds can take between three and four hours.
"It is not like patching up a little booboo when a child falls," Boileau told CTV News.
"I am the one who does all the dressing so it is very hard, because you are the one who hurts your child and you have to go through it. You develop a strong shell."
She calls her son "a rock," and says they get strength from each other to get through the days.
Boileau controls her son's pain as best she can, first with Tylenol before they moved on to morphine and then to methadone.
Pitre also has two dogs for companionship, Molly and Gibson, who not only entertain him when he is in tears from the pain. They can also tell when a wound is getting serious.
'They are not alone'
Pitre has become the face of a little-known genetic disease that affects about 50,000 people in North America.
He attended his first conference for patients with EB back in 2012, in Toronto. It was the first time he had met anyone else who suffers with the same condition. He vowed then that he would figure out how to help them, and raise awareness about the disease.
"As much as some people would find us not as attractive, I find all of us so beautiful in our own ways, you know, inside," Pitre said. "So I would like to go and honour them and make sure they know they are not alone."
He is sharing his story, and showing his wounds, to raise money to grant wishes to others like him who suffer from EB.
His own wish is to see the Northern Lights from Alaska.
"I would like to think that we would be able to go to such a beautiful place and just rest, because we don't get much of that," he said.
Boileau says the fundraising campaign to grant wishes has received an "amazing" response.
Two airlines have donated flights, while other donors have offered their homes and cash. More than $80,000 has also been raised to grant wishes to others with EB.
The campaign has even caught the attention of Pitre's sports heroes. Canadian-born broadcaster Aliya-Jasmine Sovani posted a video to YouTube with CFL players, Toronto Raptor Patrick Patterson and others sportscasters, praising the teen's strength.
"You are a winner, my man," says TSN host Cabral "Cabbie" Richards says. "You are a winner. Your strength inspires all of us."
Donations can be directed to DEBRA Canada, online at debracanada.org or by mail to: DEBRA Canada, 1500 Upper Middle Road, Unit 3, PO Box 76035, Oakville, Ont., L6M 3H5.
The campaign has given Pitre mental and physical strength.
"I am stronger now because I know what I am about, and I know what I am supposed to do here," he says.
He says he will keep working until "everyone knows about" EB.