14-year-old, Jonathan Pitre from Russell, Ontario is an avid hockey fan. He dreamt on playing hockey someday but unfortunately, he never had the chance and had to let go of his dream.
Jonathan Pitre, also known as the”Butterfly Child”, suffers from the worst disease you’ve never heard of, Epidermolysis bullosa (EB), a very rare, inherited and incurable disease that causes the skin to blister, shear and scar, endlessly. It’s a condition that leaves his skin as fragile as butterfly wings. He is raising awareness about his illness, and inspiring others with his struggle.
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. His skin is so sensitive that his body must be wrapped in gauze to protect it at all times. Even the lightest brush of a bed sheet can cause another burn-like blister.
In severe cases such as Jonathan’s, it hurts to walk, eat and bath. In other words, to live.
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, he’s fortunate enough to managed to get by without a feeding tube, unlike so many others with EB. 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.
I can’t live my life to the fullest, but I do try that, I can tell you. I don’t let that get me down,” Pitre said.
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. 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,” sais Boileau.
Boileau controls her son’s pain as best she can, first with Tylenol before they moved on to morphine and then to methadone to induce sleep.
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.
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. So I would like to go and honour them and make sure they know they are not alone,” Pitre said.
He is sharing his story, and showing his wounds, to raise money to grant wishes to others like him who suffer from EB because of that 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.
I’m done with the dream of trying to play sports. I knew I’d never be able to play sports, but I tried to have hope that I would. Now I know what’s reality. But I still would like to do something in sports: I’d like to be a scout, or a sportscaster on Sportsnet, you know, one of the commentators,” Pitre said.
Jonathan is truly a remarkable person; he is constantly smiling despite being in pain every second of everyday, we can all learn a lot from his strength and lust for life.