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When he was still a young boy, Jonathan Pitre had an older woman approach him in the grocery store as he sat in a shopping cart being pushed by his mother, Tina Boileau.
The woman took in Jonathan’s bandaged body and some of the red, angry blisters on his hands and other exposed skin.
“Oh, mon pauvre enfant,” she exclaimed.
Jonathan sat up straight in his seat, and shot back: “I’m not poor.”
The woman learned, in a heartbeat, what I have come to understand in four years of interviewing and writing about Jonathan: You cannot project your life, and your expectations for it, onto him. He doesn’t want pity; he wants friendship. He doesn’t want you to turn away; he wants you to understand his disease. And he doesn’t spend time feeling sorry for himself: he’s too busy squeezing the nectar out of the life he’s been given.
Jonathan’s life is full of pain, but equally full of love. And while it’s almost impossible to exaggerate the amount of suffering he endures in any given week, Jonathan is a fundamentally happy person.
There’s a force to his joie de vivre. Even when he’s sick and exhausted — as he was last week when I visited him in Minnesota during a chemotherapy session — he can will himself to take part in the world around him: to talk, think, analyze, joke and laugh.
His mother told me recently that she can’t help but be impressed by him.
“With all of the adversity he’s faced, he’s never once looked at me and said, ‘You know what Mom, I would wish to have another life.’ That’s something, because if I was in his shoes, I might wish that I would have somebody else’s life…
“He enjoys every little moment: standing there and looking at a chipmunk brings him so much joy. Watching someone cycle down a street. Not being envious but being happy to see that person do it.
“I think most of us don’t have that kind of maturity.”
Jonathan’s goodness comes across in all of his interviews, and it’s one of the reasons I think his story resonates with so many people.
Yet there’s also a fundamental mystery at the heart of Jonathan’s story, an unexplained miracle of sorts.
I’ve asked him about it again and again during the past four years, and it’s the question I’ll ask him when I see him next: “Where on Earth do you find the strength?
Alice Ervin.
Jonathan Pitre, 16, was the first Canadian to undergo a bone-marrow transplant developed in the U.S. that could dramatically improve the symptoms of his Epidermolysis Bullosa.
Jonathan Pitre, family photo.
Jonathan Pitre was an active youngster, despite his challenges. His mom made sure of it.
One of a series of photos taken by the Citizen’s Julie Oliver of Jonathan Pitre and his mother that brought national attention to the teen from Russell.
Seeing Jonathan Pitre and his struggle in such intimate detail brought new attention to his story and to the challenges faced by EB sufferers.
The hockey world was particularly kind to him. He was made an honorary NHL scout by the Ottawa Senators, and attended the NHL Awards ceremony in Las Vegas. He appeared on TSN and Sportsnet broadcasts.
Jonathan handled all of the attention and publicity with modest aplomb. I remember watching him during the intermission of a Senators game when an interviewer asked him his impression of rookie Curtis Lazar, whom he had met earlier that day.
“Ah, he’s such a great kid,” Jonathan said.
I thought the same thing.
As his story became known, Jonathan met members of the Ottawa Senators, including Bryan Murray, above, who made him a pro scout for one day.
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.
Jonathan Pitre and his bud, Gibson.
Dr. Jakub Tolar is the Pediatric Transplant Specialist at the University of Minnesota behind Jonathan Pitre’s potentially life-changing EB bone marrow transplant.
Jonathan Pitre and his mother at a hospital in Minnesota.
Jonathan Pitre goes through his four-hour bath ritual, an agonizing ordeal he trusts only his mother, Tina Boileau, to perform.
Photos by Julie Oliver
Jonathan Pitre is comforted by his mother following a draining round of radiation.
Best of luck, Jonathan.
查看原文...
The woman took in Jonathan’s bandaged body and some of the red, angry blisters on his hands and other exposed skin.
“Oh, mon pauvre enfant,” she exclaimed.
Jonathan sat up straight in his seat, and shot back: “I’m not poor.”
The woman learned, in a heartbeat, what I have come to understand in four years of interviewing and writing about Jonathan: You cannot project your life, and your expectations for it, onto him. He doesn’t want pity; he wants friendship. He doesn’t want you to turn away; he wants you to understand his disease. And he doesn’t spend time feeling sorry for himself: he’s too busy squeezing the nectar out of the life he’s been given.
Jonathan’s life is full of pain, but equally full of love. And while it’s almost impossible to exaggerate the amount of suffering he endures in any given week, Jonathan is a fundamentally happy person.
There’s a force to his joie de vivre. Even when he’s sick and exhausted — as he was last week when I visited him in Minnesota during a chemotherapy session — he can will himself to take part in the world around him: to talk, think, analyze, joke and laugh.
His mother told me recently that she can’t help but be impressed by him.
“With all of the adversity he’s faced, he’s never once looked at me and said, ‘You know what Mom, I would wish to have another life.’ That’s something, because if I was in his shoes, I might wish that I would have somebody else’s life…
“He enjoys every little moment: standing there and looking at a chipmunk brings him so much joy. Watching someone cycle down a street. Not being envious but being happy to see that person do it.
“I think most of us don’t have that kind of maturity.”
Jonathan’s goodness comes across in all of his interviews, and it’s one of the reasons I think his story resonates with so many people.
Yet there’s also a fundamental mystery at the heart of Jonathan’s story, an unexplained miracle of sorts.
I’ve asked him about it again and again during the past four years, and it’s the question I’ll ask him when I see him next: “Where on Earth do you find the strength?
•
I’ve always had the emotional makeup of my Scottish mother, who cries only at funerals. In three decades as a newspaper reporter, I’ve covered with dry eyes plane crashes, car accidents, drownings, murders and child abductions. I’ve travelled to places traumatized by earthquake, hurricane and flood.
I’ve interviewed people paralyzed by rollovers, motorbike and diving accidents, and others shattered in Afghanistan. I’ve written about children with Elephant Man’s disease, Duchenne muscular dystrophy and Larsen Syndrome, a terrible affliction that leads to bone dislocations.
So I was surprised and embarrassed when I couldn’t keep it together in the newsroom as I described to then city editor Jordan Timm my first meeting with 12-year-old Jonathan.
It would not be the last time. Jonathan gets to me.
I was introduced to him because of Alice Ervin. Alice suffered from a severe form of Epidermolysis Bullosa (EB) and, like Jonathan, she had remarkable grace and determination: Alice graduated from Carleton University’s journalism program and was working on her first novel when she died of skin cancer at 25. It’s a common fate for those with severe EB.
Alice Ervin.
I wrote an obituary about Alice and, after it was published, Erin Hoyos of the EB charity, DEBRA Canada, asked me whether I was interested in meeting someone near Ottawa with the same disease.
That turned out to be Jonathan.
I met Jonathan for the first time in October 2012 at his home in Russell. We talked at his sunny kitchen table. He told me about how, when his EB flared up, he would be forced to sit out of his Grade 7 gym class — something he hated because he considered himself “a sports guy.”
I learned about EB. Those with the incurable condition are missing a key structural protein that connects the upper layer of skin with those below it, which means their skin blisters easily and heals slowly.
Jonathan’s doctor at Toronto’s Hospital for Sick Children, Dr. Elena Pope, told me his form of EB is one of the most painful afflictions known to medicine. “At the severe end of the spectrum, you are basically a burn victim all your life,” she explained.
Nonetheless, Jonathan dreamed of playing professional hockey or baseball and, failing that, he wanted to be a pro scout.
“That Jonathan is a sports guy,” I wrote then, “speaks to the inner steel of a boy so outwardly fragile that his skin breaks from the brush of a shirt sleeve.”
He didn’t understand then the terrible trajectory of his disease. He didn’t understand that — if Alice’s experience was any guide — his life might be nearing its mid-point.
That got to me.
Jonathan’s pale face was untouched by blisters, and it was easy to imagine his life without EB: He’d be on every team, the class president, always running out the door to meet his buddies. Instead, his disease dominated his life. He had trouble making friends and had never been invited to a birthday party.
Jonathan Pitre, 16, was the first Canadian to undergo a bone-marrow transplant developed in the U.S. that could dramatically improve the symptoms of his Epidermolysis Bullosa.
Still, there was that strength.
“Here’s something people don’t understand when I say it, but I’ll say it anyway: Of course I’m not, you know, happy that I have this,” he told me. “But, at the same time, I kind of am because I prefer it being me than somebody else.
“The reason why I say that is because I will not let the condition stop me. The condition doesn’t control me. And no matter how hard it smacks me, I will always smack harder. I’ll never give up, no matter what the situation is.”
•
When he was born, late on evening on June 2, 2000, Jonathan Pitre was perfect: There was hardly a blemish on him. Early the next morning, however, a doctor, puzzled by the blisters that had developed on the infant’s fingers, ordered him transferred to the Children’s Hospital of Eastern Ontario.
Jonathan Pitre, family photo.
En route to CHEO, Jonathan stopped breathing as his throat closed with blisters. An emergency intubation saved his life. For the next month, he was in an incubator while doctors investigated his mysterious ailment.
He was ultimately diagnosed with recessive dystrophic EB, a genetic disorder that causes the skin to endlessly blister, shear and scar. Those with the rare disease are known as “butterfly children” because of their fragility.
They must be swaddled in bandages to protect their skin from damage and infection.
Jonathan’s mother quickly mastered the art of managing his blisters and applying his dressings. She remade her life to care for him full-time, and constantly improvised. His Jolly Jumper was padded with silk from an old wedding dress. Jonathan wasn’t allowed to crawl — it would tear skin from his knees — so Tina built a padded baby walker for him. She replaced all of the zippers on his coats and pants with Velcro.
Tina also engineered experiences for her son. She took him bicycling and ice-skating; he tried sledge hockey and went go-karting. Sometimes, he’d come away with a giant blood blister on his rear end, but he never complained.
Jonathan Pitre was an active youngster, despite his challenges. His mom made sure of it.
At the age of 12, Jonathan’s life changed dramatically. He attended an international EB conference in Toronto where, for the first time, he met other children with the same terrible disease.
“I think that was 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.”
He put his athletic ambitions on the shelf. Jonathan became an ambassador for DEBRA Canada and dedicated himself to the cause of raising awareness.
In November 2014, based on his new role, I interviewed Jonathan again about his life with EB. This time, he also agreed to a request by the Citizen’s Julie Oliver to photograph him during his evening bath ritual — an hours-long ordeal.
Oliver captured the intimacy and agony of his bath, during which his mother unwrapped him, lanced his blisters and bandaged his wounds.
One of a series of photos taken by the Citizen’s Julie Oliver of Jonathan Pitre and his mother that brought national attention to the teen from Russell.
Seeing Jonathan Pitre and his struggle in such intimate detail brought new attention to his story and to the challenges faced by EB sufferers.
Jonathan’s decision to show the world his frail and damaged body fuelled an extraordinary response.
The Citizen story went viral and donations flooded into DEBRA Canada — more than $200,000 in all.
“People had heard the wounds were big and deep, but they had never seen them with their own eyes before that,” Jonathan told me later, trying to explain the phenomenon.
His story was picked up by TSN, ESPN, People Magazine, USA Today, The Huffington Post, The Daily Mail and dozens of others.
He became a local celebrity, and had to allot more time to get anywhere because so many people stopped him in the street. Each such meeting he considered a personal victory: “There’s one more person that knows about EB.”
The hockey world was particularly kind to him. He was made an honorary NHL scout by the Ottawa Senators, and attended the NHL Awards ceremony in Las Vegas. He appeared on TSN and Sportsnet broadcasts.
Jonathan handled all of the attention and publicity with modest aplomb. I remember watching him during the intermission of a Senators game when an interviewer asked him his impression of rookie Curtis Lazar, whom he had met earlier that day.
“Ah, he’s such a great kid,” Jonathan said.
I thought the same thing.
As his story became known, Jonathan met members of the Ottawa Senators, including Bryan Murray, above, who made him a pro scout for one day.
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.
•
A framed portrait of Jonathan’s dog, Gibson, hangs in his Minneapolis hospital room, and a Boston Terrier stares up from his pillowcase. He often watches a computer video of Gibson, and connects with him on FaceTime. They have a special bond.
“It’s not just that he’s my best friend: I think I’m his best friend,” Jonathan once told me.
Gibson is one of those great mistakes. It made no sense to bring a new puppy into the house when Jonathan could be seriously injured by a dog that scratched or jumped on him.
But Gibson understood Jonathan right from the start. He launched himself at anyone who came through the door, yet Gibson somehow knew Jonathan was special: He’d lick his hand, and wait for him to sit down. At bath time, he’d lick Jonathan’s wounds, and pin back his ears when he sensed a particularly bad blister.
Jonathan hates hospitals, and what he hates most about them is being separated from his dog.
“I miss Gibson,” he told me.
Jonathan Pitre and his bud, Gibson.
Photographer Julie Oliver and I travelled to Minnesota last week to cover Jonathan’s stem cell transplant. The transplant is Jonathan’s best hope for a different kind of life: one with less pain and more freedom.
It’s the only meaningful treatment available for severe EB, but it’s a long, physically demanding, life-threatening ordeal. There’s high-dose chemotherapy, radiation and an endless number of blood and drug transfusions.
Dr. Jakub Tolar, director of the University of Minnesota’s Stem Cell Institute and the researcher who pioneered the treatment, spelled it all out for Jonathan at a meeting earlier this year. “You cannot have a transplant without the risk of dying,” Dr. Tolar told him. “You will have complications that are grave and life-threatening. But that’s the plan.”
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Dr. Jakub Tolar is the Pediatric Transplant Specialist at the University of Minnesota behind Jonathan Pitre’s potentially life-changing EB bone marrow transplant.
Each day we were in Minneapolis, Jonathan grew weaker and sicker. His eyes became rheumy, his nose watery, and he could barely hold his head up sometimes for weariness. His hair has since fallen out.
His four- to five-hour bath — an important infection-control measure — brings more acute suffering every second day.
Even though exhausted, Jonathan must go through its painful motions: soak in the bath; be stripped of bandages and dressings; have new blisters lanced; bathe again; have new dressings and bandages applied. The IV port in his chest, which has to stay dry, further complicates all of it.
Jonathan trusts only his mother to conduct the ritual, which has always been part of their shared experience.
Jonathan Pitre and his mother at a hospital in Minnesota.
They’re so close that Jonathan regularly refers to himself with the plural pronoun, “we.” He looks for her in every new room. When he’s stumped by an interview question, he turns to her for a quick discussion.
They have talked about death and miracles, and every mystery in between.
Tina celebrated a birthday in Minnesota, just before we arrived. Despite being well into his chemotherapy, and confined to his room, Jonathan orchestrated a surprise that included a card, balloons and a gift basket stuffed with art supplies and beauty products.
Jonathan told me he has only seen his resolute mother cry three times in his life. Once was when she read his birthday card.
“It means so much that you came with me,” he wrote. “I had to do a little something for my very special mom. I love you. Have a good day.”
This is the other thing that always gets to me: The relationship between Jonathan and his mother is a thing of shining beauty, a gift of nature
She has sacrificed endlessly and happily for him and, in return, he has never given in to despair or bitterness.
So it seems poetic and right that it is her stem cells — taken from the marrow of her bones — that now have the potential to remake his life.
“There just has to be a happy ending,” Tina said.
Jonathan Pitre goes through his four-hour bath ritual, an agonizing ordeal he trusts only his mother, Tina Boileau, to perform.
Photos by Julie Oliver
•
Jonathan has trouble eating because of sores in his throat, and he steadily loses protein through his open wounds.
It means, at 16, he weighs just 70 pounds. And yet he has such enormous strength.
When I first met him, Jonathan relied heavily on Advil and optimism to see him through his rough days.
“Don’t give up, it’s just a bad day. Tomorrow will be a better day,” he’d tell himself.
Later, he told me, he pictured EB as a spectral enemy and used his imagination to contain it. “I try to invent myself as a dragon and use their powers to heal me and fight through the pain.”
In Minnesota, he told me he had discovered new things about himself and the source of his willpower.
“It’s something I’ve had to develop since I was a little baby, I guess,” he said. “Maybe my will is stronger for some reason just because I’ve had to use it more often.”
“Does it never get worn down?” I asked.
It gets tired and battered, he told me, and “The pain can be so strong that it just overwhelms me.” In those moments, he relies upon the bright blue bubble of energy that he has found.
“That’s my willpower,” he explained. “It’s this little ball of energy that holds my very being. And it’s what’s keeping me alive. It’s what’s keeping me fighting EB, step by step, without giving up.”
The stem-cell transplant has been exceedingly difficult.
“Me and mom have learned a lot about ourselves, about how strong we can be together,” he told me.
His mother agreed. “We feed off each other: That’s how we’ve always done it.”
The nights have been particularly difficult. Tina sleeps on a couch in Jonathan’s hospital room so that she can help him go to the bathroom and adjust his pain medications. One night, when he was up every 15 minutes to clear a chemo drug from his bladder, Jonathan admitted he was sick of the whole process.
“Yup, but we’re not giving up, right?” Tina asked him.
Jonathan didn’t hesitate: “Not a chance,” he said.
Jonathan Pitre is comforted by his mother following a draining round of radiation.
That a boy so fragile can fight so much is the miracle of Jonathan Pitre. It’s humbling to watch, this valiant feat of life and love and willpower.
And it makes me weak in the knees to consider whether I could do the same. Where would I ever find the strength?
Because unlike me — unlike most of us — Jonathan has to fight for every ounce of life. In Minneapolis, he told his doctors that he’d rather endure pain during the day than be muddled by drugs. Many days, it hurt just to sit in his chair and talk.
But Jonathan has been hero enough. What he needs now is a different kind of miracle, a modern medical one.
He needs his stem cell transplant to take root in his bones, and produce new cells with the power to heal him. He needs to be able to take a few things for granted: a day without pain, a night out with friends, a long walk with Gibson.
Before I left Minneapolis, I gave Jonathan a note, thanking him for spending time with us and promising that we’d come back to see him walk out of hospital.
“Until then, courage,” I wrote him. “Courage.”
My word; his life.
Best of luck, Jonathan.
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