Families of children with EB salute ‘amazing and courageous’ ambassador
Families of other “butterfly children” mourning the loss of Jonathan Pitre say the courage he showed through his young, difficult life brought them strength, inspiration and a sense of hope.
Pitre died Wednesday at age 17 from complications caused by epidermolysis bullosa (EB).
DEBRA Canada, the advocacy and awareness group for which Pitre served as ambassador and the group’s most recognizable champion, called it “the worst news possible,” saying Pitre had “traded in his butterfly wings for angel wings.”
Board chair Jay Wilson, the father of two boys with EB, said the group vowed to continue Pitre’s legacy.
“Since Jonathan was embraced by the Ottawa Citizen, by the Senators, by the folks of Ottawa, the amount of awareness and education has been night and day,” said Wilson, who said donations to the group have increased “tenfold.”
As the inspiration behind DEBRA Canada’s “ambassador wish program,” Wilson said Pitre provided hope to other children suffering from the painful disease.
The organization recently provided a British Columbia family with a “sit-ski” for their young daughter so she could join the family on ski trips.
Others connected to the EB community in Canada said they were “devastated” by the news, with several families sharing their own personal stories in DEBRA’s online forum. “He touched so many hearts and lives with his sweet smile,” wrote Deep Mann, whose son, Brayden, suffers from EB. “My son has lost his best friend … Jonathan fought till the end and never gave up and neither can we.”
His inspiration extended beyond Canada’s borders, as others in the international EB community followed Pitre’s journey and that of his mother, Tina Boileau.
“He was encouraging other kids to try different treatments, he was this voice for EB and it was inspiring to see that. Yes, he has this terrible condition, but he never once let it stop him from helping others,” said A.J. Rinaldi, whose five-month-old son, Landon, suffers from EB.
Rinaldi said his son was diagnosed shortly after he was born, “And we started on this long, unknown journey that we’re on now.
“He doesn’t let it slow him down, he’s always smiling and giggling, so from his personality and his attitude, you would never know he has (EB). But when you see under the clothes and the bandages and see all the damage. … Our concern at this point is he’s starting to trend towards the severe direction, but again with EB you never know what direction it’s going to go.”
Rinaldi said he drew strength and hope while following Pitre’s story from his home near Toledo, Ohio. He said while he was “hit hard” by the tragic news, he remains hopeful.
“I don’t focus on how long I have left with my son,” he said. “I want to stay in the present, in these moments where he’s laughing and giggling and rolling around, just trying to figure out how to be a baby. And meanwhile we’re all sitting on pins and needles wondering what the future holds.”
The Rinaldi family was connected through the “small but incredible” EB community with another family, also living in Ohio and struggling with the disease.
In a Facebook posting, Lindsay Monnier said she learned of Pitre’s passing on Friday — the same day her own son, Eli, was scheduled for a bone-marrow transplant at the same Minnesota hospital that treated Pitre. “Jonathan Pitre was two doors down from us when we got admitted on March 28th,” she wrote. She said she smiled when she passed by Pitre’s room last weekend and saw a digital sign that read: “I feel good today.”
Monnier shed “a massive amount of tears,” she wrote, since learning of the passing of her “biggest inspiration.”
“Eli is feeling well this morning. He saw me crying and gave me a long hug and then started being goofy to make me laugh,” she wrote. “We will make today a great day, in honour of Jonathan, who always emoted positivity.”
Rinaldi said Pitre will continue to be “the shining light” that he was for so many. “This kid, he touched so many lives and was so impactful. He was inspiring to me, and one day I hope my son, or other people in the EB community, I hope they continue to be that voice and continue to push others to help find some sort of treatment or cure.”