'Butterfly Boy' Jonathan Pitre recovering after stem cell treatment

CTV National News: Treating a painful disease He is known as the 'Butterfly Boy,' and as Avis Favaro reports, U.S. doctors are using a leading-edge therapy to help ease his suffering.

An Ottawa-area boy who suffers from a rare and painful skin disease is “in high spirits” in a Minneapolis hospital, where he’s recovering from an experimental stem cell surgery.

Jonathan Pitre, who’s become known as the “Butterfly Boy” because of his delicate, blistering skin, received a transfusion of his mother Tina Boileau’s stem cells on Thursday afternoon.

Pitre, 16, was born with a severe form of epidermolysis bullosa (EB), an incurable genetic collagen disorder. The condition causes a never-ending series of raw and painful blisters -- some of which he’s had for years.

Boileau said Friday that Jonathan has experienced some fevers since the procedure but his spirits are high. She said it feels amazing to finally be able to give her son something that might make him feel better.

“When I went to put him to bed, I went to give him a big hug and said, ‘You know buddy I am so proud of you,’” she told CTV News. His response, according to Boileau, was that he plans to “will” the new stem cells into his body.

“As a mom, I can’t wait to see the progress,” Boileau added. “Hopefully one day he will have a life without so much pain and (have) a day where he doesn’t have to go through all the daily EB routines, like a four-hour bath.”

She points out that her son still faces a risk of infection because of his suppressed immune system. There’s also the chance his immune system will reject the stem cells and his condition will continue.

Dr. Jakub Tolar, the pediatric transplant specialist who performed Jonathan’s bone marrow transplant, said there is a risk of dying from the procedure but that about two-thirds of those who survive the bone marrow transplant see their lives transformed.

“We have been seeing children and young adults that have changed entirely, from someone closed in their apartment, in despair or anger about their pain and their disability, to someone who goes to school, plays with their teammates, swims in the ocean, jumps on a trampoline, plays a trumpet…” Dr. Tolar said.

So far, 30 children with EB have undergone the procedure over the past 10 years, he said.

Dr. Tolar explained that it will take about four to five weeks before he knows whether the stem cells “have taken.”

“Right after that, you will see, hopefully, that he also produces the cells that… produce this all-important type of collagen (that) heals his wounds and remain there hopefully for the rest of his life.”

Dr. Tolar told the Ottawa Citizen that many untreated EB patients die in their 20s due to an aggressive form of skin cancer.

The $1.5-million transplant procedure is currently only performed as part of a University of Minnesota clinical trial.

The Ontario Health Insurance Plan is covering the medical costs, but Boileau will face about $150,000 in out-of-pocket expenses related to the estimated three months Jonathan will stay in Minneapolis.

Earlier this week, Pitre had to undergo several days of intense chemotherapy and radiation so that he would stop producing his own white blood cells in hopes that his immune system will accept the new stem cells. He will undergo another round of chemo after two days of rest.

Pitre has become a celebrity of sorts in the Ottawa area since he was profiled in the local media, which noted the positive attitude he maintains in the face of constant pain.

With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip