An Ottawa-area boy with a rare skin disorder is on the verge of a turning point in his recovery from an experimental procedure, his mother says.
Jonathan Pitre, known as the “Butterfly Boy,” was born with epidermolysis bullosa (EB), a rare incurable genetic disorder that causes him to continuously break out in painful blisters.
Pitre’s mother, Tina Boileau, provided an optimistic update in a Facebook post Monday, where she said her son’s skin is “healing in ways it never has before” following an experimental treatment in April.
“Big open wounds are decreasing in size other chronic wounds have completely closed up,” Boileau wrote. “Now that the skin is behaving and doing what all of this was supposed to do, the rest of his body will follow. I am happy to say that Jon’s been infection free for weeks now.”
For 15 years, Pitre had tried operations to improve his quality of life and all had proven unsuccessful. In the summer of 2016, Pitre and Boileau decided to try an experimental stem cell transfusion at the University of Minnesota.
“Unlike many of the other treatments that we had tried in the past, that had minimal risks, the (blood and marrow transplant) had several notable and possible life threatening ones,” Boileau wrote. “However, it also had the potential of changing Jonathan’s life significantly for the better and give him many more years with us.”
The first stem cell transplant did not work, but another in April, 2017, showed more positive results. Pitre was allowed to return to his home in Russell, Ont. in June.
“Two transplants and one stem cell boost later, we feel optimistic that Jonathan is heading in the right direction,” Boileau wrote.
Pitre is still dealing with an issue involving his gallbladder, but has a meeting with doctors Thursday to discuss their options.
“Now all we need is to fix this gallbladder issue and we are golden,” Boileau said. “We, along with the team of doctors, think this will be a turning point in Jonathan’s recovery.”
