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While the operation may afford Pitre a dramatic new lease on life, it also comes with potentially fatal complications.

Eight of the 30 children who have undergone the procedure have died, most of them from infections. But two-thirds of the survivors have experienced life-changing improvements: tougher skin, reduced blistering and better wound healing.

“One of the reasons we’re doing it is to try to prolong my life,” Pitre told the Ottawa Citizen in an interview this week. “Right now, if we don’t do anything, I may not live to be 20. Maybe 18 even. So my time really is running short…

“Hopefully, my quality of life will improve — that’s the No. 1 thing. We know it’s not a cure.”

Photo by Julie Oliver / Ottawa Citizen

Pitre is scheduled to be in Minneapolis on August 22 to begin treatment.

His mother will travel with him and donate blood, bone marrow and skin grafts for the procedure, which could keep them in Minnesota for up to a year.

Boileau first heard about the transplant option five years ago, and has been carefully following its results.

[np_storybar title=”” link=””]Epidermolysis bullosa (EB) by the numbers

17,000: The number of live births that produce one case of EB

25: The percentage chance that two parents, both of whom carry the gene for EB but don’t know it, will give birth to a child with the disease

13: The number of major genes that have been identified as playing a role in the development of EB; the genetic defects mean the body’s skin layers do not adhere well to each other