OTTAWA -- He was known as the Butterfly Child.

Friday, the Governor General honoured Jonathan Pitre and his mother Tina Boileau during a ceremony at Rideau Hall.

Pitre was awarded the Meritorious Service Cross and his mother received the Meritorious Service Medal, recognizing courage and exceptional dedication to service.

"It's a very humbling day for us, it's full of emotions. I wish Jonathan was here to see everything he's done, he's done a lot of good work and I'm there to keep it going," said Boileau.

Pitre passed away in 2018 at the age of 17 after a lifelong battle with epidermolysis bullosa (EB), a rare skin disease.

He spent his life raising awareness and funds for research, a commitment his mother has since taken on.

Pitre captured the hearts of Canadians displaying incredible courage, and set the highest standard -- confronting his illness with bravery and class.

"He wanted to raise funds so that one day we might not need to be talking about EB, I keep going because I'm a mom and I lost my child to EB, something no one should have to go through," said Boileau.

It isn't the first time Pitre's legacy has been recognized. In 2020, a new French Catholic elementary school in Riverside South was named in his honour and Jonathan Pitre Accessible Park is being built in his hometown of Russell.

"He never really recognized the impact he had on people. Everyone could relate to him because we all have good and bad days, and being able to have a school named after him, this is the first school named after a child, i think that's very powerful," said Tina.

While his mother received the Meritorious Service Cross for the late Jonathan Pitre on Friday, she's sure he was watching proudly.

"I think that right now I can hear his laugh, that belly laugh that was so contagious, that laugh I can still hear when I close my eyes. I think he would have a hard time believing everything that's happened over the years, but he would be so proud," Boileau said.