Epidermolysis bullosa is considered one of the most painful conditions a human can endure. EB is an incurable, rare genetic tissue disorder that affects 200 children born in the United States every year. Currently, there are fewer than 17,000 people suffering from EB in the world. Epidermolysis bullosa leaves sufferers with skin so delicate they are commonly referred to as “butterfly children.”
One of the effects of EB is that the skin rips and tears very easily and patients with the disorder spend hours each day treating and wrapping their wounds to keep clear of infections. It is a perpetual cycle of never-ending pain and suffering.
Jonathan Pitre of Ottawa is referred to as the face of EB. Jonathan and his mother, Tina Boileau, became involved with DEBRA Canada and Jonathan became the ambassador and Tina the president of the organization in 2012. Two years later, his story was known worldwide after a local newspaper ran a story about him and his condition. The feature noted that there was never a moment when he wasn’t in pain – even while he was sleeping.
Jonathan’s efforts in bringing awareness to EB and other sufferers together was lauded by people everywhere. He was only 12 when he took on his role with DEBRA Canada and raised more than $200,000 for families affected with Epidermolysis bullosa. Sadly, the 17-year-old passed away last week at the University of Minnesota Masonic Children’s Hospital from the complications of septic shock while in pursuit of an experimental treatment for EB.
Head to the next page for more on Jonathan and his fight…