There were multiple smiles at the University of Minnesota Masonic Children’s Hospital on Monday, as the famous Ottawa teenager, known as the “Butterfly Boy” was discharged.
Jonathan Pitre had undergone about two stem cell transplants, a cell boost, and spent over a year confined to the “shackles” of a hospital bed. This development though, comes as a huge relief to Pitre.
“First I didn’t really believe it, just because two weeks ago it didn’t look like it was any kind of close,” Pitre disclosed.
“Then we kind of started to kind of swallow it – but it was like swallowing a big horse. It took a while for us to kind of get out of our stupor and really believe it.”
Epidermolysis Bullosa (EB) sometimes termed “The Worst Disease You’ve Never Heard Of” has been Pitre’s fate from birth. Born with the incurable and rare genetic connective tissue disorder, his skin tears quite easily and breaks constantly into blisters. This in turn causes severe damage to his internal organs and bodily systems.
The condition which accompanies severe pains and is mostly lethal, has caused Pitre to spend the past 15 years of his life undergoing numerous operations and treatment procedures, in a bid to improve his condition and general quality of life.
“It’s not a walk in the park, I can tell you that. When they tell you it’ll be one of the toughest things you’ll ever do, you believe it.”
Tina Boileau, the mother of 17 year old Pitre, took her soon about a year ago to a hospital in Minneapolis for an experimental stem cell transfusion.
Though a second transplant was scheduled in April after the first one ended up unsuccessful, Boileau announced via her Facebook page that the second transplant proved more promising. “It’s been probably the most trying time in our lives, I mean it really challenges everything you believe in.” Boileau said.
“Seeing your child going through so many difficult times and just not being able to do anything to help, but at the same time holding onto hope that things are going to turn around and this is his best chance at a better quality of life.”
She then announced about a month later about Pitre’s condition.
“Thankfully we saw some improvement in Jonathan’s skin quite a few months ago, so that was something we were holding onto,” She said. “He’s been through so many other complications that could’ve been very discouraging at times.”
Boileau then shared a touching photo of her son on Thanksgiving Day exiting the hospital through a pair of open doors along with an inspirational quote from an unknown author.
She said that her son’s determination and perseverance throughout his battle with the disease was “inspirational”.
Her post—which had warmed the hearts of several online visitors, garnered hundreds of comments from well wishers desperate to see Pitre return home finally.
After eventually being discharged from the hospital, Pitre is currently spending nights with his mother at their Minneapolis apartment. Though they will still have to visit the hospital frequently, so Pitre can be tested to ensure he doesn’t develop any infections, Boileau said.
She said she’s hopeful that her son won’t have to visit the hospital as frequently after next week.