Photo courtesy of the Ottawa Citizen.
When people look at 16-year old Jonathan Pitre and his mother Tina, their first response is to feel sympathy. But anyone who meets them comes away inspired by their incredible courage and caring for others.
“I talk to Tina almost every night by phone to see how they’re doing, and she always wants to know how my day was, and what I’m facing,” says Paul Rushforth. “Even though Jonathan’s in incredible pain and there’s a real possibility he won’t make it, they are both so concerned about other people.”
The “Butterfly Boy”
Jonathan was born with recessive dystrophic epidermolysis bullosa, a rare and extremely painful genetic condition in which even the gentlest touch can leave painful wounds, similar to 3rd degree burns. EB sufferers are often referred to as “butterfly children” because their skin is so fragile.
Jonathan lives every day with pain as a constant companion. Even lying on a bed can cause blisters and wounds. Every night, his mother Tina must help him bathe and change his bandages so his wounds don’t get infected, a process that takes hours and is painful – in different ways – for both son and mother.
But Jonathan hasn’t lost hope and he still dreams of leading a better life, thanks to a new procedure that may help – or may kill him.
Hope for a Pain-Free Life
Right now, Jonathan is at a hospital in Minnesota receiving bone marrow, skin and blood transplants from Tina. The process will need to continue for another 11 months.
This treatment comes at a high price, however. And while OHIP is helping, it is not enough to cover all of the medical expenses. The family is paying over $20,000 every month to undergo the procedure, not to mention the financial strain caused by past expenses.
3 weeks ago, Paul Rushforth and Mike Pilon of Romantic Fireplaces and BBQs set up a GoFundMe campaign to help the Pitre family with medical expenses so they can focus on winning their battle with the condition. Please join us and contribute what you can.
The Story of a Friendship
While Paul Rushforth and his team have always done a lot for charity, Jonathan’s case has clearly made a huge impact.
“I first learned about Jonathan when the Ottawa Senators brought his situation to light,” says Paul. “I couldn’t forget about his fighting spirit. I reached out to Tina on Facebook about a year ago and we’ve been friends ever since.”
The friendship became closer when the opportunity to go through this new medical process came up, but the Pitre family was short of funds. Paul continues the story.
“I found out that they were having a golf tournament fundraiser, but that it wasn’t doing very well. I invited him to speak at our charity golf tournament, and when he left the stage there wasn’t a dry eye in the house. Mike Pilon (from Romantic Fireplaces and BBQs) was also blown away by Jonathan and Tina, and wanted to help. He had sponsored a prize at our tournament, but no one was able to win it. Instead, we auctioned it off and gave the proceeds to the Pitre family.”
The story doesn’t end there. “We promoted Jonathan’s fundraiser like crazy and we were able to get it to sell out in 2 weeks. But the family was still facing some colossal bills. I thought it just wasn’t fair that they had to worry about costs on top of facing an incredible sickness. Mike and I knew we had to do more.”
That’s when the decision was made to reach out to everyone to try and get as much help as possible from the community.
What message does Paul have for Jonathan? “You keep up the fight. You’re a warrior, and you help keep others focused and positive just by making it through the day.”
Let’s do what we can to help a true fighter win the most important battle of all. Please give what you can to the Pitre family.
Learn More About Jonathan and Epidermolysis Bullosa
To learn more about Jonathan’s story, you can watch this documentary (sensitive viewers please be cautious – this video is graphic in its depiction of Jonathan’s suffering). You can also read the full Ottawa Citizen Story detailing Jonathan’s daily challenges and courage.