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He found solace and strength in science fiction, and like those he read about, Jonathan Pitre had otherworldly qualities.
He had one of the most painful diseases known to medicine, epidermolysis bullosa (EB), but was defiantly happy. He couldn’t scratch without tearing his skin, but dreamed of playing hockey. Ostracized by other children, he thrived in the adult world: poised, thoughtful and genuine.
Jonathan found purpose in helping others with EB. He made himself the face of the disease, shared his story worldwide, and raised a small fortune for the EB charity, DEBRA Canada. His sunny, red-haired resilience charmed millions of people, and made him an Ottawa celebrity. None of it changed him.
“Jonathan’s heart is so pure and bright,” his mother, Tina Boileau, once said.
Her son, Jonathan Pitre, died Wednesday evening in a Minnesota hospital. He was 17.
Jonathan fought desperately to live, but he succumbed to complications from septic shock — an organ-destroying condition triggered by a rampant infection.
As always, his mother was at his side.
“I can’t imagine my life without him,” she said through tears Thursday.
Jonathan had entered the University of Minnesota Masonic Children’s Hospital last Friday when he spiked a fever. He had been battling a skin infection that resisted antibiotics for three weeks.
Yet there was no reason for alarm since he had suffered a series of similar medical issues. In the year since his stem cell transplant — an experimental procedure that held out the promise of a life without EB’s terrible burdens — he had cycled in and out of hospital with infections, fevers and nausea.
Friday’s admission sought to bring his fever under control. “He was all happy-go-lucky and looking forward to getting out,” Boileau said.
On Saturday, Jonathan’s blood pressure dropped, but he was still eating and in good spirits.
“We figured it was just his infection working. We had been down this path before,” Boileau said.
Jonathan Pitre and his mother, Tina Boileau, in hospital in Minneapolis.
The following day, his blood pressure dropped again and doctors treated it with dopamine. But on Monday, Jonathan deteriorated further. His breathing became laboured, and doctors struggled to reverse the advance of sepsis, a condition that results from the body’s runaway response to an infection.
Jonathan was moved to the intensive care unit to support his breathing, but one crisis followed another. His lungs filled with fluid and his kidneys failed. He was revived once when his heart stopped. But he still required emergency dialysis.
Unwilling to watch her son suffer anymore, Boileau had Jonathan brought back to his hospital room where he had spent much of the past year. She tucked him into bed with his favourite blankets.
He died at 8:28 p.m. Wednesday.
“He’s no longer suffering and that’s what he wanted,” Boileau said. “That’s what I wanted.”
She’s now arranging to have her son’s body flown back to Ottawa, and is planning a small, private funeral.
When he was born, late on the evening of June 2, 2000, Jonathan Pitre was perfect: There wasn’t a blemish on him.
Early the next morning, however, a doctor, puzzled by the blisters that had developed on his fingers, ordered him transferred to the Children’s Hospital of Eastern Ontario. En route to CHEO, Jonathan stopped breathing as his throat closed with blisters and swelling. An emergency intubation saved his life. For the next month, he was in an incubator as doctors investigated.
Jonathan was ultimately diagnosed with recessive dystrophic EB, a severe form of the disease that causes the skin to blister, shear and scar. Those with the disease are known as “butterfly children” because of their fragility.
The family would later learn that Jonathan’s EB was the product of a random mutation: a terrible turn on the genetic wheel of fortune.
READ: Unwavering strength: The story of ‘Butterfly’ mom Tina Boileau
Tina Boileau and Jonathan Pitre when he was 15.
Boileau dropped out of university to care for Jonathan and quickly mastered the art of managing blisters and applying dressings. She constantly improvised. Jonathan’s Jolly Jumper was padded with silk from an old wedding dress. Since he wasn’t allowed to crawl — it would tear the skin from his knees — she built him a padded baby walker. She replaced all of the zippers on his coats and pants with Velcro.
In school, Jonathan was a straight-A student yet struggled to make friends. He often watched from the sidelines as others played sports.
But his mother always engineered fun for him. She took him bicycling, go-karting, even ice-skating. Sometimes, he’d come away with giant blood blisters from his adventures, but he never complained.
He lived in his imagination. A devoted fan of science fiction, Jonathan read widely and steeled himself against each day’s pain by conjuring dragons and demigods to aid him in his fight.
He was writing his own book of science fiction when he died.
At times during his life, Jonathan wondered about the purpose of his daily struggle. In 2012, he found an answer to that question at an EB conference in Toronto organized by DEBRA Canada. It was the first time he had ever met other children with the same disease.
“I think that was a turning point in my life,” he once told me. “Before that, I didn’t really have meaning in my life. I didn’t know what I was here for … I came to understand that my role in life was to help people with EB.”
Jonathan became an ambassador for the charity and dedicated himself to the cause of raising awareness. In that role, I first interviewed him. He told me about his daily battle with EB and his dream of one day flying to Alaska to see the Northern Lights. He also agreed to let the Citizen’s Julie Oliver photograph him during his bath ritual — an hours-long ordeal.
Oliver captured the intimacy and agony of his bath, during which his mother unwrapped him, lanced his blisters, bandaged his wounds and rewrapped him in gauze.
Love, courage and inspiration: Photos from the tremendous life of Jonathan Pitre
Jonathan’s decision to show the world his pain fuelled an extraordinary response: Donations flooded into DEBRA Canada — more than $200,000 — and his story went viral. TSN, ESPN, People Magazine, USA Today, The Huffington Post, the Daily Mail and dozens of other media organizations interviewed him. He was made an honourary NHL scout by the Ottawa Senators, circled a racetrack in Montreal with Indy car driver Alex Tagliani, and delivered a speech to a thunderous ovation at WE Day.
Erik Karlsson of the Ottawa Senators speaks to Jonathan Pitre during the 2015 NHL Awards on June 24, 2015 in Las Vegas, Nevada.
The hockey world was particularly generous. He attended the NHL Awards ceremony in Las Vegas in a suit that Sidney Crosby had made for him in Montreal. Senators forward Kyle Turris and his wife, Julie, gave Jonathan a signed jersey and another for his Boston terrier, Gibson. They corresponded with him regularly.
All the while, however, Jonathan’s disease continued its relentless march. By the time he reached Grade 10, he was in too much pain to attend school, and often fell asleep in the early evening, exhausted by his disease.
Jonathan had skin graft surgery in an attempt to alleviate his suffering, but it didn’t work. That left him with only one meaningful option to arrest his disease: a high-risk stem cell transplant.
Around her tattoo of a butterfly, surgeons withdraw Tina Boileau’s bone marrow — rich in the stem cells — from her hip bone at the University of Minnesota Masonic Children’s Hospital.
Boileau convinced OHIP to cover the $1-million cost of the experimental treatment, pioneered by the University of Minnesota’s Dr. Jakub Tolar. Without it, Jonathan faced a life ever more limited by EB, and an early death. (Most people with his severe form of the disease die from an aggressive form of skin cancer in their early 20s.)
His first stem cell transplant in September 2016 failed to engraft. Although disappointed, Jonathan returned to Minnesota in February 2017 for a second attempt — and this time it took root in his bone marrow. Deep wounds on his legs, feet and back began to heal, and he talked excitedly about the prospect of coming home later this year.
More than anything else, Jonathan wanted to reunite with his dog, Gibson, whom he considered his best friend. Pictures of the dog covered his hospital room. He connected with Gibson every day on FaceTime. “I tell him everything,” Jonathan explained. “He’s kind of like my therapist.”
Jonathan Pitre, with his dog Gibson.
He desperately wanted the most normal of things. Friends. Hockey. Birthday parties. Dog walks. A driver’s licence. A day without pain.
Jonathan drew strength from his mother, and vice-versa. In any room, Jonathan looked for her: He always wanted to know where she was because she was the only one who understood the many ways his complex disease could harm him. Jonathan often referred to himself with the plural pronoun “we” to encompass his mother. “She does everything she can to help without any concern for herself,” he told me.
Jonathan fought for every minute of happiness, every hour of normalcy. In hospital, he told doctors in his plain, forceful way that during the day, he would rather endure pain than be muddled by opioids.
I have been honoured to chronicle Jonathan’s story for six years. Close to his 16th birthday, I asked him what made him proudest, and he spoke about how many more people have become aware of EB because of his and his mother’s efforts. “I think I’m proudest of all of the things we’ve able to accomplish together,” he said. “People know more about EB now than they ever did since I was born.”
Jonathan was never well enough to travel to see the Northern Lights — part of a cosmos that forever intrigued him. He told me that he always imagined EB kids, after they died, became another light in the sky.
So tonight I’ll look to the heavens to find him: a star called Jonathan.
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He had one of the most painful diseases known to medicine, epidermolysis bullosa (EB), but was defiantly happy. He couldn’t scratch without tearing his skin, but dreamed of playing hockey. Ostracized by other children, he thrived in the adult world: poised, thoughtful and genuine.
Jonathan found purpose in helping others with EB. He made himself the face of the disease, shared his story worldwide, and raised a small fortune for the EB charity, DEBRA Canada. His sunny, red-haired resilience charmed millions of people, and made him an Ottawa celebrity. None of it changed him.
“Jonathan’s heart is so pure and bright,” his mother, Tina Boileau, once said.
Her son, Jonathan Pitre, died Wednesday evening in a Minnesota hospital. He was 17.
Jonathan fought desperately to live, but he succumbed to complications from septic shock — an organ-destroying condition triggered by a rampant infection.
As always, his mother was at his side.
“I can’t imagine my life without him,” she said through tears Thursday.
Jonathan had entered the University of Minnesota Masonic Children’s Hospital last Friday when he spiked a fever. He had been battling a skin infection that resisted antibiotics for three weeks.
Yet there was no reason for alarm since he had suffered a series of similar medical issues. In the year since his stem cell transplant — an experimental procedure that held out the promise of a life without EB’s terrible burdens — he had cycled in and out of hospital with infections, fevers and nausea.
Friday’s admission sought to bring his fever under control. “He was all happy-go-lucky and looking forward to getting out,” Boileau said.
On Saturday, Jonathan’s blood pressure dropped, but he was still eating and in good spirits.
“We figured it was just his infection working. We had been down this path before,” Boileau said.
Jonathan Pitre and his mother, Tina Boileau, in hospital in Minneapolis.
The following day, his blood pressure dropped again and doctors treated it with dopamine. But on Monday, Jonathan deteriorated further. His breathing became laboured, and doctors struggled to reverse the advance of sepsis, a condition that results from the body’s runaway response to an infection.
Jonathan was moved to the intensive care unit to support his breathing, but one crisis followed another. His lungs filled with fluid and his kidneys failed. He was revived once when his heart stopped. But he still required emergency dialysis.
Unwilling to watch her son suffer anymore, Boileau had Jonathan brought back to his hospital room where he had spent much of the past year. She tucked him into bed with his favourite blankets.
He died at 8:28 p.m. Wednesday.
“He’s no longer suffering and that’s what he wanted,” Boileau said. “That’s what I wanted.”
She’s now arranging to have her son’s body flown back to Ottawa, and is planning a small, private funeral.
LOVE, COURAGE AND INSPIRATION: The tremendous life of Jonathan Pitre
When he was born, late on the evening of June 2, 2000, Jonathan Pitre was perfect: There wasn’t a blemish on him.
Early the next morning, however, a doctor, puzzled by the blisters that had developed on his fingers, ordered him transferred to the Children’s Hospital of Eastern Ontario. En route to CHEO, Jonathan stopped breathing as his throat closed with blisters and swelling. An emergency intubation saved his life. For the next month, he was in an incubator as doctors investigated.
Jonathan was ultimately diagnosed with recessive dystrophic EB, a severe form of the disease that causes the skin to blister, shear and scar. Those with the disease are known as “butterfly children” because of their fragility.
The family would later learn that Jonathan’s EB was the product of a random mutation: a terrible turn on the genetic wheel of fortune.
READ: Unwavering strength: The story of ‘Butterfly’ mom Tina Boileau
Tina Boileau and Jonathan Pitre when he was 15.
Boileau dropped out of university to care for Jonathan and quickly mastered the art of managing blisters and applying dressings. She constantly improvised. Jonathan’s Jolly Jumper was padded with silk from an old wedding dress. Since he wasn’t allowed to crawl — it would tear the skin from his knees — she built him a padded baby walker. She replaced all of the zippers on his coats and pants with Velcro.
In school, Jonathan was a straight-A student yet struggled to make friends. He often watched from the sidelines as others played sports.
But his mother always engineered fun for him. She took him bicycling, go-karting, even ice-skating. Sometimes, he’d come away with giant blood blisters from his adventures, but he never complained.
FROM OUR ARCHIVES: ‘Butterfly child’ dreams of the Northern Lights
He lived in his imagination. A devoted fan of science fiction, Jonathan read widely and steeled himself against each day’s pain by conjuring dragons and demigods to aid him in his fight.
He was writing his own book of science fiction when he died.
At times during his life, Jonathan wondered about the purpose of his daily struggle. In 2012, he found an answer to that question at an EB conference in Toronto organized by DEBRA Canada. It was the first time he had ever met other children with the same disease.
“I think that was a turning point in my life,” he once told me. “Before that, I didn’t really have meaning in my life. I didn’t know what I was here for … I came to understand that my role in life was to help people with EB.”
Jonathan became an ambassador for the charity and dedicated himself to the cause of raising awareness. In that role, I first interviewed him. He told me about his daily battle with EB and his dream of one day flying to Alaska to see the Northern Lights. He also agreed to let the Citizen’s Julie Oliver photograph him during his bath ritual — an hours-long ordeal.
Oliver captured the intimacy and agony of his bath, during which his mother unwrapped him, lanced his blisters, bandaged his wounds and rewrapped him in gauze.
Jonathan Pitre: A life in photos
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Love, courage and inspiration: Photos from the tremendous life of Jonathan Pitre
Readers around the world were moved by Jonathan Pitre’s strength and courage. He was an inspiration to us all. Julie Oliver/Postmedia
Some play time with Gibson. "He's my best friend - my only real friend," says Jonathan. "We have an unbelievable bond. He knows when I'm down and cheers me up." Julie Oliver/Ottawa Citizen
Even amidst the painful and tiring task of washing and re-dressing all of his wounds - which takes four hours and must be done every other day - Tina and Jonathan laugh often and heartily. Julie Oliver/Ottawa Citizen
"Butterfly Child" Jonathan Pitre was the first Canadian to undergo a bone-marrow transplant developed in the US to improve the devastating symptoms of his Epidermolysis Bullosa (EB). Julie Oliver/Ottawa Citizen
Jonathan Pitre and his mother, Tina Boileau at the hospital in Minneapolis.
Jonathan Pitre Julie Oliver/Ottawa Citizen
Jonathan Pitre /courtesy of the family
Jonathan Pitre /courtesy of the family
Jonathan Pitre spoke about philanthropy as the guest speaker of the 21st Annual AFP Ottawa Philanthropy Awards held at the Shaw Centre on Thursday, November 19, 2015. Caroline Phillips/Ottawa Citizen
Jonathan Pitre. Tina Boileau
Jonathan Pitre and his mother, Tina Boileau, in hospital in Minneapolis. Julie Oliver/Postmedia
Jonathan Pitre reading on his iPad while back in his apartment on Wednesday. Tina Boileau
Like a surgical unit, Tina has everything laid out in her bedroom next to the bathroom: bandages, tape, cushy mats and a warm heater to help Jonathan stay warm until all the bandages are reapplied for another day. Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen) JULIE OLIVER/OTTAWA CITIZEN
Jonathan Pitre was exhausted but he found some strength while watching the Ottawa Senators close out the New York Rangers in Game 6 of their second-round playoff series in 2017. Tina Boileau
Jonathan Pitre’s mother, Tina Boileau tweeted this photo of Jonathan with Sens regalia cheering on his favourite team from his hospital bed. Tina Boileau/Twitter
Late general manager of the Ottawa Senators, Bryan Murray, Pierre Dorion and Randy Lee, sign Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014.
Jonathan Pitre pictured in Dec. 2017 Tina Boileau
Jonathan Pitre's skin.
Jonathan's pain threshold is unimaginable for most, but still antibiotics and pain relievers play a daily role in his life. He takes half a dozen pills three times a day along with two doses of methadone just to make the pain tolerable. Julie Oliver/Ottawa Citizen
Jonathan Pitre . /Twitter
A day of celebration in 2017 when Jonathan Pitre left the hospital. Tina Boileau
Late general manager of the Ottawa Senators, Bryan Murray signs Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014. Jean Levac/Ottawa Citizen
Jonathan Pitre inspired students at the We Day festivities in Ottawa, April 01, 2015. Jean Levac/Ottawa Citizen
Jonathan Pitre and his mother, Tina Boileau. Tina Boileau/.
Jonathan Pitre at his Minnesota apartment. Tina Boileau
Jonathan Pitre on his way home. Credit Tina Boileau /-
Jonathan Pitre being released from hospital in 2017. Tina Boileau
Jonathan went outside on a beautiful day in Minnesota, accompanied by his mother and his heavily-laden IV tree. Tina Boileau
Jonathan Pitre and Canadian Consul General Khawar Nasim make the call: "Lets play hockey!" Bruce Kluckhohn/NHLI via Getty Images
Jonathan Pitre enjoying a burger and fries after a rough stretch. Tina Boileau
Progress in 2017 on Jonathan Pitre's back. Tina Boileau/-
Jonathan Pitre and his Boston terrier, Gibson, are reunited. Courtesy Tina Boileau/-
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant. Julie Oliver/Postmedia
Photo of Jonathan Pitre and his mother, Tina Boileau, taken in Minnesota. Tina Boileau/-
Jonathan Pitre Tina Boileau/-
Jonathan Pitre undergoes full-body radiation at the University of Minnesota Masonic Children's Hospital. /-
Jonathan Pitre is seen just before undergoing full-body radiation on Wednesday, April 12, 2017 at the University of Minnesota Masonic Children's Hospital. Tina Boileau/-
Jonathan Pitre rests in bed, his pillow with his Boston terrier, Gibson, on it close by. Tina Boileau/-
Jonathan Pitre and Canadian Consul General Khawar Nasim are seen on the scoreboard as they make the call: "Lets play hockey!" Bruce Garrioch/Postmedia
Jonathan Pitre and Kyle Turris, who stay in touch by email, talk during the Senators' visit. Bruce Garrioch/Postmedia
Jonathan Pitre readies for his second stem cell transplant, which will take place April 13th at the University of Minnesota Masonic Children's Hospital. Tina Boileau/-
The Ottawa Senators' Erik Karlsson, Kyle Turris and Bobby Ryan visit with Jonathan Pitre and his mother, Tina Boileau. Bruce Garrioch/Postmedia
The Ottawa Senators pose with Jonathan Pitre during a visit in Minneapolis on Wednesday, March 29, 2017. Photo by Bruce Garrioch/Postmedia /-
The Ottawa Senators pose with Jonathan Pitre during a visit in Minneapolis on Wednesday, March 29, 2017. Photo by Bruce Garrioch/Postmedia /-
Jonathan Pitre is back in a Minnesota hospital, where's he's fighting blood and lung infections in advance of a second stem cell transplant. Tina Boileau/-
Jonathan Pitre, in his car in Minnesota. Tina Boileau/-
Jonathan Pitre sponsored a hockey party at CHEO Saturday December 31, 2016 with money he was awarded with the RBC's Canada 150 initiative along with added money he donated. Kevin Keohane President & CEO at CHEO talks to Pitre who was video chat into the party. Ashley Fraser/Postmedia
Jonathan Pitre is celebrating Christmas in Minnesota this year as he awaits news on a possible new stem cell procedure. /Tina Boileau
From left, Noemy Pitre, Jonathan Pitre and their mom, Tina Boileau, after finishing a 5K race in May 2016. Ashley Fraser/Postmedia
Jonathan Pitre and his mom, Tina Boileau. Taken on Friday October 7, 2016.
Photo of Jonathan Pitre. supplied by his mother, Tina Boileau /-
Jonathan Pitre in his room at the University of Minnesota Masonic Children's Hospital. /-
Jonathan is helped into school by his teacher's aid, Nathalie Courillon-Chevalier. He arrives to school early and gets to classes a couple of minutes late to avoid all the traffic in the hallways. His skin is so sensitive, often the slightest of touches in the wrong place can hit a wound and cause excruciating pain. Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. Julie Oliver/Ottawa Citizen
"It's the first white blood cells we've seen since the transplant. So yes, it's working," said Tina Boileau, Jonathan Pitre's mother. Andrew Duffy/Postmedia
The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (EB. Julie Oliver/Postmedia Julie Oliver/Postmedia
Jonathan Pitre /courtesy of the family
Jonathan Pitre /courtesy of the family
The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (EB. Julie Oliver/Postmedia Julie Oliver/Postmedia
The night before Jonathan Pitre's last round of chemotherapy (Sunday, Sept. 12, 2016) is bath time in his room at the University of Minnesota Masonic Children's Hospital. It is a four-hour ordeal where his mother, Tina Boileau, carefully removes and replaces the dressings that cover almost his entire body. As his mother punctures the blisters and gently pads them with gauze, the agony becomes unbearable at times - especially in his weakened condition - and he needs another bump of painkillers. The chemo and radiation have removed all of his white blood cells, he's running a fever of 105 degrees on this night and he's exhausted. This is the critical post-transplant period where his body is reduced to an empty shell in the hopes his mother's transplanted stem cells will take hold inside of him and help reverse the catastrophic symptoms of his Epidermolysis Bullosa (Julie Oliver/Postmedia) Julie Oliver/Postmedia
Jonathan Pitre and his mom, Tina Boileau, have shaved their heads after Jonathan's hair began to fall out by the handful following his chemo treatments. Tina Boiileau via Facebook/-
Jonathan Pitre has asked doctors to provide him a written list of the conditions that he has to meet in order to be discharged from hospital. Among other things, he has to be free of complications such as infections, nausea and fevers. Julie Oliver/Postmedia
5:12 a.m. (Minnesota time), the University of Minnesota Masonic Children's Hospital is still shrouded in darkness, but Tina Boileau has woken up and is heading down to pre-op to get ready for the transplant surgery she hopes will change her son's life. Later today, those stem cells will be transplanted into her son, Jonathan Pitre, in the hope they will begin to heal his skin. Jonathan will be the first Canadian to receive an "EB bone marrow transplant." Julie Oliver/Postmedia
7:59 a.m. (Minnesota time), around her tattoo of a butterfly, surgeons withdraw Tina Boileau's bone marrow - rich in the stem cells - from her hip bone at the University of Minnesota Masonic Children's Hospital Thursday (Sept. 8, 2016). Julie Oliver/Postmedia
7:27 a.m. (Minnesota time). Tina Boileau jokes with the nurses en route to the OR, where surgeons will remove bone marrow - rich in the stem cells - from her hip bone at the University of Minnesota Masonic Children's Hospital Thursday (Sept. 8, 2016). Julie Oliver/Postmedia
6:18 a.m. (Minnesota time), Tina Boileau fields a call from the media about what lies ahead for her and Jonathan today - ground zero day - the day Tina Boileau's bone marrow - rich in the stem cells - will be removed from her hip bone at the University of Minnesota Masonic Children's Hospital Thursday (Sept. 8, 2016). Julie Oliver/Postmedia
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant. Julie Oliver/Postmedia
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant. Julie Oliver/Postmedia
Jonathan Pitre is comforted by his mother, Tina Boileau, following a draining round of radiation Wednesday (Sept. 7, 2016) at the University of Minnesota Masonic Children's Hospita on the even of becoming the first Canadian to undergo an EB bone marrow transplant. Julie Oliver/Postmedia
- Tina cries as she leaves her daughter, and Jonathan's younger sister, Noemy, behind in the driveway. Butterfly child, Jonathan Pitre, says goodbye to his sister and family as he leaves his Russell home Wednesday (August 17, 2016) for a bone marrow transplant operation in Minnesota. Jonathan, 16, who suffers from EB, will be travelling with his mom, Tina Boileau, who will be his transplant donor and will be with him for the next year in Minnesota for the groundbreaking, but risky, procedures that no other Canadian has ever undergone. Only about 30 transplants have been done on EB patients and about a quarter didn't live through them. Some others didn't have the intended result, but about half were able to relieve the horrible symptoms associated with EB. Julie Oliver/Postmedia Julie Oliver/Postmedia
Tina blows a kiss to her family as the pair leave the driveway. Butterfly child, Jonathan Pitre, says goodbye to his sister and family as he leaves his Russell home Wednesday (August 17, 2016) for a bone marrow transplant operation in Minnesota. Jonathan, 16, who suffers from EB, will be travelling with his mom, Tina Boileau, who will be his transplant donor and will be with him for the next year in Minnesota for the groundbreaking, but risky, procedures that no other Canadian has ever undergone. Only about 30 transplants have been done on EB patients and about a quarter didn't live through them. Some others didn't have the intended result, but about half were able to relieve the horrible symptoms associated with EB. Julie Oliver/Postmedia Julie Oliver/Postmedia
Along with his mom, Tina Boileau, "Butterfly Boy" Jonathan Pitre, now 15, reflects on his eventful year from their home in Russell Tuesday, Dec. 8, 2015. Julie Oliver/Ottawa Citizen
'I feel them closing up,' Jonathan Pitre says of his hands, which have gotten worse in the past year. Julie Oliver/Ottawa Citizen
"Butterfly Child" Jonathan Pitre, 16, will be the first Canadian to undergo a bone-marrow transplant developed in the US to dramatically improve the devastating symptoms of his Epidermolysis Bullosa (EB). Julie Oliver/Ottawa Citizen
Jonathan Pitre, centre, with his sister Noemy and mother Tina, pose after finishing the 5K race part of Tamarack Ottawa Race Weekend Saturday May 28, 2016. Ashley Fraser
LAS VEGAS, NV - JUNE 24: Erik Karlsson of the Ottawa Senators speaks to Jonathan Pitre during the 2015 NHL Awards at MGM Grand Garden Arena on June 24, 2015 in Las Vegas, Nevada. Ethan Miller/Getty Images
General manager of the Ottawa Senators, Bryan Murray (l) Jonathan Pitre as a pro scout for one day at the Canadian Tire Centre in Ottawa, November 20, 2014. Jean Levac/Ottawa Citizen
6 a.m.: After teeth brushing and washing comes the brushing of the hair, which Jonathan winces at when his mom accidentally hits a couple of sore spots on his head. Julie Oliver/Ottawa Citizen
Craig Kielburger (R) of We Day was on stage with Jonathan Pitre during the We Day festivities in Ottawa, April 01, 2015. (Jean Levac/ Ottawa Citizen) Jean Levac/Ottawa Citizen
Jonathan Pitre gets a cut by House of Barons senior barber, James Fowler, during a promotional event in the Byward Market Thursday September 10, 2015 for Opera Lyra's Figaro, the Barber of Seville, which runs from Saturday September 26 to Saturday October 3 at the National Arts Centre. (Darren Brown/Ottawa Citizen) Darren Brown/Ottawa Citizen
Pittsburgh Penguins star Sidney Crosby arranged to have his Montreal tailor prepare a business suit that would allow Jonathan Pitre, 14, to enter a rink with the same style as any NHL player or executive. /Twitter.com
Craig Kielburger (R) of We Day was on stage with Jonathan Pitre during the We Day festivities in Ottawa, April 01, 2015. Jean Levac/Ottawa Citizen
Jonathan Pitre inspired students at the We Day festivities in Ottawa, April 01, 2015. Jean Levac/Ottawa Citizen
General manager of the Ottawa Senators, Bryan Murray, left, signs Jonathan Pitre as a pro scout for one day. Jean Levac/Ottawa Citizen
Like a surgical unit, Tina has everything laid out in her bedroom next to the bathroom: bandages, tape, cushy mats and a warm heater to help Jonathan stay warm until all the bandages are reapplied for another day. Julie Oliver/Ottawa Citizen
A few blisters must be pierced with a pin to stop the wound from getting bigger on his hand. Julie Oliver/Ottawa Citizen
Molly, the family's other Pug/Terrier mix, lightens the mood at bath time. Julie Oliver/Ottawa Citizen
3.30 p.m. Bath time. Washing Jonathan (in a tub filled with warm water, pool salt and some bleach), stripping and re-dressing all of his wounds can take up to four hours and must be done every other day to fend off infection and keep the blistering at bay as much as possible. It is painful and Jonathan dreads it, but it is a fact of life for kids with EB. Julie Oliver/Ottawa Citizen
A Kindle is another modern tool that really helps kids with EB, allowing them to read without holding books. It is the endless cycle of blistering and scarring that often leads to a fusing of the fingers. Jonathan has had a number of surgeries to literally pry the fingers apart and his mom is careful to wrap them separately in bandages to keep them working as best as possible. Julie Oliver/Ottawa Citizen
THE FACE OF EB. Russell teenager, Jonathan Pitre. "I see myself as a warrior," he says. "I want everyone to know what this is so we can fight it... and beat it." Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen) Julie Oliver/Ottawa Citizen
Jonathan Pitre, 15, photographed with this mother Tina Boileau, reflects on his eventful year . Julie Oliver/Ottawa Citizen
Jonathan Pitre, shown here with his mother, Julie Oliver/Ottawa Citizen
Jonathan and his mother, Tina Boileau, are inseparable. "She is my rock," he says bluntly. "I couldn't live without her." Tina allows that if there is an upside to EB, it is the special bond she shares with her son. Like many other 14-year-old boys, Jonathan Pitre loves sports, dreams of a future as a coach and has a crush on a cute girl at school. But unlike most boys his age, Jonathan suffers from Epidermolysis Bullosa (EB) - a rare disease defined by severe blistering and shearing of the skin that leaves Jonathan in constant pain - the likes of which most would find intolerable. (Julie Oliver / Ottawa Citizen) JULIE OLIVER/Ottawa Citizen
"Butterfly Child" Jonathan Pitre, 16, will be the first Canadian to undergo a bone-marrow transplant developed in the US to dramatically improve the devastating symptoms of his Epidermolysis Bullosa (EB). Julie Oliver/Ottawa Citizen
Jonathan’s decision to show the world his pain fuelled an extraordinary response: Donations flooded into DEBRA Canada — more than $200,000 — and his story went viral. TSN, ESPN, People Magazine, USA Today, The Huffington Post, the Daily Mail and dozens of other media organizations interviewed him. He was made an honourary NHL scout by the Ottawa Senators, circled a racetrack in Montreal with Indy car driver Alex Tagliani, and delivered a speech to a thunderous ovation at WE Day.
Erik Karlsson of the Ottawa Senators speaks to Jonathan Pitre during the 2015 NHL Awards on June 24, 2015 in Las Vegas, Nevada.
The hockey world was particularly generous. He attended the NHL Awards ceremony in Las Vegas in a suit that Sidney Crosby had made for him in Montreal. Senators forward Kyle Turris and his wife, Julie, gave Jonathan a signed jersey and another for his Boston terrier, Gibson. They corresponded with him regularly.
All the while, however, Jonathan’s disease continued its relentless march. By the time he reached Grade 10, he was in too much pain to attend school, and often fell asleep in the early evening, exhausted by his disease.
Jonathan had skin graft surgery in an attempt to alleviate his suffering, but it didn’t work. That left him with only one meaningful option to arrest his disease: a high-risk stem cell transplant.
Around her tattoo of a butterfly, surgeons withdraw Tina Boileau’s bone marrow — rich in the stem cells — from her hip bone at the University of Minnesota Masonic Children’s Hospital.
Boileau convinced OHIP to cover the $1-million cost of the experimental treatment, pioneered by the University of Minnesota’s Dr. Jakub Tolar. Without it, Jonathan faced a life ever more limited by EB, and an early death. (Most people with his severe form of the disease die from an aggressive form of skin cancer in their early 20s.)
His first stem cell transplant in September 2016 failed to engraft. Although disappointed, Jonathan returned to Minnesota in February 2017 for a second attempt — and this time it took root in his bone marrow. Deep wounds on his legs, feet and back began to heal, and he talked excitedly about the prospect of coming home later this year.
More than anything else, Jonathan wanted to reunite with his dog, Gibson, whom he considered his best friend. Pictures of the dog covered his hospital room. He connected with Gibson every day on FaceTime. “I tell him everything,” Jonathan explained. “He’s kind of like my therapist.”
Jonathan Pitre, with his dog Gibson.
He desperately wanted the most normal of things. Friends. Hockey. Birthday parties. Dog walks. A driver’s licence. A day without pain.
Jonathan drew strength from his mother, and vice-versa. In any room, Jonathan looked for her: He always wanted to know where she was because she was the only one who understood the many ways his complex disease could harm him. Jonathan often referred to himself with the plural pronoun “we” to encompass his mother. “She does everything she can to help without any concern for herself,” he told me.
Jonathan fought for every minute of happiness, every hour of normalcy. In hospital, he told doctors in his plain, forceful way that during the day, he would rather endure pain than be muddled by opioids.
FROM OUR ARCHIVES: Reporter Andrew Duffy and how he learned the miracle of the butterfly boy
I have been honoured to chronicle Jonathan’s story for six years. Close to his 16th birthday, I asked him what made him proudest, and he spoke about how many more people have become aware of EB because of his and his mother’s efforts. “I think I’m proudest of all of the things we’ve able to accomplish together,” he said. “People know more about EB now than they ever did since I was born.”
Jonathan was never well enough to travel to see the Northern Lights — part of a cosmos that forever intrigued him. He told me that he always imagined EB kids, after they died, became another light in the sky.
So tonight I’ll look to the heavens to find him: a star called Jonathan.
JONATHAN PITRE: “It has been a huge journey.”
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