Boy with painful 'butterfly skin' disease inspires

For 14-year-old Jonathan Pitre, going through the daily motions of life is excruciating.

Pitre was born with Epidermolysis Bullosa, a rare genetic condition that causes the skin to blister and makes everyday activities like eating, drinking and bathing excruciatingly painful, the Ottawa Citizen reported.

Although the disease has no cure, Pitre has not given up hope that one day there will be. He has raised more than $100,000 for the Epidermolysis Bullosa charity, DEBRA Canada, the newspaper reported.

Because the disease makes the skin extremely fragile, people with the condition are often called "butterfly children."

"They call us butterfly children because our skin is as fragile as a butterfly's wings," Jonathan told Canadian broadcaster TSN.

Like many teenage boys, Jonathan dreamed of becoming a professional athlete. Hailing from Ontario, he wanted to be "the next Sidney Crosby" of hockey, the Ottawa Citizen reported. Despite his disease rendering him unable to play sports, Jonathan has remained positive.

Earlier this month, Jonathan spoke to 16,000 students at National We Day about his experience.

"Great things do not come easily," Jonathan told the crowd, the Citizen reported. "But they do come when you try with your full heart, when you're willing and open to embrace life, when you take things one day at a time and use what you've got."