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 鈥淏utterfly Boy,鈥� was born with epidermolysis bullosa (EB), a rare incurable genetic disorder that causes him to continuously break out in painful blisters.
Pitre鈥檚 mother, Tina Boileau, provided an optimistic update in a Facebook postMonday, where she said her son鈥檚 skin is 鈥渉ealing in ways it never has before鈥� following an experimental treatment in April.
鈥淏ig open wounds are decreasing in size other chronic wounds have completely closed up,鈥� Boileau wrote. 鈥淣ow 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鈥檚 been infection free for weeks now.鈥�
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.
鈥淯nlike 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,鈥� Boileau wrote. 鈥淗owever, it also had the potential of changing Jonathan鈥檚 life significantly for the better and give him many more years with us.鈥�
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.
鈥淭wo transplants and one stem cell boost later, we feel optimistic that Jonathan is heading in the right direction,鈥� Boileau wrote.
Pitre is still dealing with an issue involving his gallbladder, but has a meeting with doctors Thursday to discuss their options.
鈥淣ow all we need is to fix this gallbladder issue and we are golden,鈥� Boileau said. 鈥淲e, along with the team of doctors, think this will be a turning point in Jonathan鈥檚 recovery.鈥�
