Jonathan Pitre, 'butterfly child,' heading to Minnesota for life-changing treatment

Jonathan Pitre, known as the "butterfly child," will travel to Minnesota in late August to receive treatment for Epidermolysis bullosa, a rare, painful, and deadly skin disease.

The 16-year-old Ottawa boy will spend almost a year there for stem cell therapy that he and his family hope will prolong his life by strengthening his skin.

His mother, Tina Boileau, will join him in the clinical trial at the University of Minnesota to donate her bone marrow for the stem cells. On Friday the organization DEBRA Canada held a fundraiser called the Jonathan Pitre Golf Classic at Ottawa's Falcon Ridge Golf Club to raise money for the treatment and other expenses.

CBC Ottawa's Waubgeshig Rice spoke with Jonathan at the event.

How's your summer been so far?

It's been good. I've been relaxing, recuperating for the big event that's coming for me, the bone marrow transplant. It's going to be a pretty tough time, so I've been relaxing mostly. I've been spending a lot of time with my family and my dog. So just trying to spend all the memories I can with them before I leave.

Tell me about that. What's going to happen later this summer?

I'm having a bone marrow transplant. So I will be receiving a big procedure that will last about a year. It will be in Minnesota. Do you want me to tell you, like, what's going to happen for the bone transplant?

If you don't mind. If it's not too hard for you.

No no, that's good. So I'm going to start with one week of kind of exams. So they'll be doing tests on me to try to figure out if I'm healthy enough and if my mom's healthy enough, and stuff like that. So then after that I will be doing chemotherapy for a week. And after that I will be getting the bone marrow transplant. Then after that it's a big process of just healing, trying to make sure that I'm healthy and not getting any kind of colds or bacteria, because I will be in quarantine for about two months, approximately, just because my immune system will be completely shot. And after that it's just the process of healing and healing until I get to go home.

How do you feel going into that? 

Nervous for sure, of course, because it's such a big procedure. But aside from that, I'm excited, because it's a big opportunity for me. It has a chance to completely, dramatically improve my life, which is great. So I'm pretty happy. Pretty excited.

What will your life look like once the procedure is done?

In reality, we don't really know. One thing is that my life could potentially be very much better. I will still have EB, but it will be dramatically improved. The wounds will be smaller, it will actually start healing, which is a first for me. It's been not healing for a long time, my wounds. So it will be interesting.

Family is huge for you, obviously, and your Mom's going to be down there with you in Minnesota as a big part of that procedure, that operation. How does that feel?

For Mom to be there with me is a great kind of motivation. Having her there is kind of a reassurance also. I know how much respect that we have for each other and going into this we know it's going be a tough journey. We're scared of course... so having her there with me is very special. It means a lot to me.

These efforts today, having so much of the community here to support you, what's that like for you?

Really, it's just humbling. Just to see all these people that I know and have known throughout the years. There's people that I know from everywhere, really — from the Sens and then from other events I've done. So it's just nice to see everyone just coming together and willing to put up a big fight and help me beat EB.

How important is that for you to make sure people understand your story and what you're going through?

It's important for everyone to be able to understand the story just because it's not really for me that I would like for people to know about this disease. It's mostly for everyone else that's been struggling with people not understanding. Like in school, not understanding what kind of needs they have. And just all the people who bully them. For people to understand what we are and how we are, just to be able to understand us more and hopefully become friends.

Having a year away from home, a lot of procedures and that kind of thing, what would you say to people like you who have something big in front of them?

For someone who has something big in front of them, it's really just all about trying to believe that you're doing this for a good reason. So it's kind of like a motivation to do it. And at the same time, you have to think that when you come back, you'll be much better and you'll be able to live even longer with your family. So it's pretty great to have these opportunities. It's a once in a lifetime opportunity. So it's important to realize that you're doing this for a good reason and you are coming back home....I'd like them to know that they have to believe and just to have fun with it. It's a big adventure. So you never know what's going to happen.

This interview was edited for length.