The mother of Jonathan Pitre says her son's skin is “healing in ways it never has before.”
In an emotional Facebook post, about her experiences managing her son's blistering skin disease, Tina Boileau says she is optimistic Jonathan is headed in the right direction.
“Jonathan’s skin is healing in ways it has never before,” Boileau writes. “Big open wounds are decreasing in size other chronic wounds have completely closed up. 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, his WBC is coming in nicely and we are working on getting rid of the platelet antibodies he’s developed.”
Jonathan is still facing a gall bladder issue, but Boileau says they’re meeting with doctors about that on Thursday.
“Now all we need is to fix this gallbladder issue and we are golden. We, along with the team of doctors, think this will be a turning point in Jonathan’s recovery,” Boileau said.
Boileau’s post described the 17 years she’s spent helping Jonathan manage his Epidermolysis Bullosa.
“It's harder than anything I've ever done, and honestly, the sheer magnitude of what we've been up against has been so overwhelming that at times I wasn't sure we would make it,” she wrote. “The emotional roller coaster that we have been on for the last 17 years, and seeing my child suffer daily without respite has been more than I can handle.”
But with Jonathan appearing to be on the mend, Boileau ended her post on a hopeful note.
“Jonny Boy, I can’t wait to hear you say these words: I feel good today and this was all worth it. Imagine how different your life will be when you can say these simple words and believe them?”
Two transplants and one stem cell boost later, we feel optimistic that Jonathan is heading in the right direction. https://t.co/wuMOpGyMh8 pic.twitter.com/2dNMQeAUFq
— Tina Boileau (@BoileauTina) September 18, 2017