'Butterfly Boy' heading to U.S. for therapy

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Jonathan Pitre will travel to Minnesota this summer to begin a blood and marrow transplant in a perilous, last-ditch bid to halt the advance of his blistering skin disease.

Pitre will become the first Canadian to take part in an ongoing clinical trial operated by the University of Minnesota’s Dr. Jakub Tolar , a pediatric transplant specialist who has developed a groundbreaking treatment for the two most severe forms of Epidermolysis bullosa (EB).

Pitre, who celebrated his 16th birthday earlier this week, suffers from recessive dystrophic EB, a rare, painful and deadly form of the disease.

Those with aggressive RDEB usually die from skin cancer as young adults.

That hard fact has led Pitre and his mother, Tina Boileau, to accept the risk associated with the transplant, which will see Pitre infused with stem cells drawn from his mother’s bone marrow. The stem cells have the power to remake Pitre’s damaged skin.

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 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.”

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.

The University of Minnesota’s Masonic Children’s Hospital is the only facility in the world that conducts the procedure.


Saving Jonathan Pitre: ‘Butterfly Boy’ heading to U.S. for therapy that could change his life | Ottawa Citizen

OHIP pays for procedure, but other medical/living expenses are up to them.

Here's a link to where you can help.
Sons of Liberty
Best hopes and wishes to you young man.
captain morgan
Poor kid.

Best wishes to him and the success of the treatment

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