Tina Boileau lost her son, Jonathan Pitre, in 2018, who was living with the painful skin condition epidermolysis bullosa
Tina Boileau will speak about the loss of her son, Jonathan Pitre, at a Sunday afternoon event hosted by the Ottawa branch of the Bereaved Families of Ontario.
Pitre was 17 when he died in a hospital in Minnesota, where he had sought a medical miracle to stop the advance of his painful skin condition, epidermolysis bullosa, which limited almost every aspect of his life.
He died four years ago, on April 4, 2018, of a runaway infection that developed after his second stem cell transplant. His skin had improved and he was nearing the return journey home as the deadly infection spread.
Commonly known as the “butterfly child,” Pitre was posthumously awarded the Meritorious Service Cross last year by Governor General Mary May Simon for his contributions to Canada. Pitre raised more than $200,000 to help EB patients and did more to raise the profile of the disease than anyone before him.
Boileau will speak about the loss of her son at 3 p.m. Sunday at Beechwood Cemetery, where the Ottawa chapter of the Bereaved Families of Ontario (BFO) hosts its annual Butterfly Memorial, a fundraising event. The event kicks off at the Beechwood National Memorial Center before heading out for the butterfly release.
BFO Ottawa is a volunteer-run charity that aims to help people grieving the loss of loved ones through peer support groups and other programs.