May 14, 2017 10:49 PM
Jonathan Pitre is covered in bandages, but it's what's underneath them that makes him so extraordinary.
Not the burn-like sores that cover 80 percent of the 16-year-old's body, but rather the strong spirit that sustains him, and the even stronger bond he has with his mom.
"Jonathan and I have become a team. We find comfort in each other. He's my rock and I am his," said Pitre's mom, Tina Boileau.
"It's been a crazy ride I tell you," Pitre said. "What we've done together the whole way."
Pitre has a rare skin disorder known as Epidermolysis Bullosa, or EB. The problem: his body is not producing an essential protein known as collagen that would hold the layers of his skin together.
"It's not easy not being able to relieve him ever of that pain," Boileau said. "That's my biggest wish, to give him a day without pain."
That's why they have come to the University of Minnesota, currently the only place in the world where that wish could come true.
Dr. Jakub Tolar, director of the university's Stem Cell Institute, is experimenting with a way to give EB patients new skin. It starts with a bone marrow transplant.
"What we have found is that there are some cells in the bone marrow that produce that important collagen," Tolar said. "That's the glue that brings the two layers of the skin together.
"They set up shop and start growing until they build the whole immune and blood-forming system from very few cells."
The blood and bone marrow donor: Pitre's mother, of course. Later, if the transplant works, patches of her skin will also be used to generate new skin growth on Jonathan. A reminder that science -- and a mother's devotion -- can sometimes lead to a miracle.
"Honestly, it's probably one of the most meaningful things as a mom that I can ever do for him," Boileau said.
Pitre had one transplant in September that didn't work. 5 EYEWITNESS NEWS met him right before a second try in April.
"I'm scared. I'm hopeful. I'm ready to get this done," he said.
During the transplant, Tolar's team collected Boileau's bone marrow from the back of her hip, captured it in a bag, and transferred it to Pitre, who was waiting in a separate operating room. He'd been prepared to accept his mom's cells with several rounds of radiation and chemotherapy leading up to the transplant.
"The second time has to be the charm," Boileau said.
Pitre's immune system is too fragile since the transplant, so he was not available for an interview for this story. It will take weeks to know if the transplant is a success.
A few weeks after the transplant, doctors will start looking for the first signs of success. They'll take a blood sample as well as a bone marrow biopsy to see if his mom's donor cells are present and multiplying. If so, the first patches of new skin growth could start to appear in a few months.
"Everybody wishes to be able to help their kids. This is my way to help him, in a sense. Now Jonathan will have a part of me in him," Boileau said.
Many photos for our report were provided by the Ottawa Citizen. Click here to follow ongoing coverage: http://ottawacitizen.com/?s=Jonathan+pitre
Updated: May 14, 2017 10:49 PM
Created: May 09, 2017 01:02 PM
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