'You never give up': 'Butterfly Boy' leaves hospital
Jackie Dunham, CTVNews.ca
Published Wednesday, October 11, 2017 10:12AM EDT
Last Updated Wednesday, October 11, 2017 9:24PM EDT
After two stem cell transplants, one cell boost and more than a year of being confined to a bed, Jonathan Pitre is finally leaving the hospital.
The Ottawa-area teenager, known as the “Butterfly Boy,” because the rare skin disorder he suffers makes his skin as fragile as a butterfly, was discharged from the University of Minnesota Masonic Children’s Hospital on Monday.
“First I didn’t really believe it, just because two weeks ago it didn’t look like it was any kind of close,” Pitre told CTV News Channel’s Scott Laurie on Wednesday.
“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 “
Pitre was born with epidermolysis bullosa (EB), an incurable genetic disorder that causes his skin to easily tear and constantly break into blisters. He has spent the past 15 years undergoing countless treatments and operations to improve his condition and quality of life.
“It’s not a walk in the park, I can tell you that,” Pitre said. “When they tell you it’ll be one of the toughest things you’ll ever do, you believe it.”
A year ago, the 17-year-old and his mother, Tina Boileau, travelled to Minneapolis for an experimental stem cell transfusion at the hospital.
Although the first transplant was unsuccessful, a second one in April proved more promising, his mother said in a Facebook post at the time.
“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.”
Months later, Pitre is healing.
“Thankfully we saw some improvement in Jonathan’s skin quite a few months ago, so that was something we were holding onto,” Boileau said. “He’s been through so many other complications that could’ve been very discouraging at times.”
On Thanksgiving Day, Boileau uploaded a touching photo of her son exiting the hospital through a pair of open doors along with an inspirational quote from an unknown author.
“Today I am thankful that you never give up... You are the epitome of strength, determination and courage,” she wrote. “Today I close the door to the past, open the door to the future, take a deep breath, step on through and start a new chapter of my life.”
Today I am thankful that you never give up... You are the epitome of strength, determination and courage Today I...Posted by Tina Boileau on Monday, October 9, 2017
Boileau said that throughout the process, her son’s perseverance and determination “shone through.”
The symbolic post was met with hundreds of comments filled with warm wishes and hopes that Pitre will be able to return home for good.
A few weeks earlier, Boileau provided an update on Pitre’s condition in which she said his skin was “healing in ways it has never before.”
“Now that the skin is behaving and doing what all of this was supposed to do, the rest of his body will follow,” Boileau wrote. “We, along with the team of doctors, think this will be a turning point in Jonathan’s recovery.”
After being discharged from the hospital, Pitre is now spending nights with his mother in their Minneapolis apartment, Boileau told CTV News Channel.
“We are far from being home, but we are discharged and into an apartment which is a lot farther . . . than a few weeks ago,” she said.
“There was a rule in our room where you don’t discuss the d-word. Discharge was just something you do not discuss, because every time that we mentioned it things would not work out. Jonathan should have been discharged last week but unfortunately he had fevers, and it’s always been more complications over complications.”
Since being discharged, Pitre says he’s been feeling well.
“I’m going good,” he told CTV News Channel. “Something just clicked and it turned it around, and I’ve been feeling better ever since. And so it’s very encouraging that’s for sure.”
With files from Daksha Rangan