For the last few months of his life, 18-year-old Braedon Lyon stayed mostly in his room. He needed oxygen machines to help him breathe; even heading to the kitchen to eat was difficult.
“He spent all his time in there,” recall his mom, Tiffany Agnew. Braedon had hepatopulmonary syndrome — breathing complications with low blood oxygen levels, associated with liver disease. He was diagnosed in December 2017 and died in May 2018.
Within a month, Tiffany launched The Braedon Foundation.
“I wanted to really shift my focus on something that was bigger than myself and something that, you know, could keep his memory alive and help others all in the same breath,” she says.
This wasn’t the first bout with terrifying illness for the family. When Braedon was seven he had a rare blood infection that sent him into septic shock. He spent time in hospital in Saint John and in Toronto, and was briefly on the transplant list before his condition began improving. Tiffany recalls time spent with nurses coming to their house, dealing with tube feedings and physiotherapy.
“I had always known that I wanted to do something, like start a foundation,” says Tiffany. “I thought about it different times off and on. When we get thrown right back into him having health issues, it made that someday feel like it was a little bit closer. Like, you know, I’d think ‘When he gets better, when he gets his liver transplant, when he recovers from all this, we’re going to do that.’ So as soon as I lost him, it wasn’t even a matter of if I could, it was like I had to.”
“I needed something and that [starting the foundation] was what I needed,” says Tiffany. “All of the people in Braedon’s life, I think they all needed it, too. It’s something for them to hang on to.”
The Braedon Foundation offers New Brunswick children with life-threatening or high-risk illnesses either a bedroom makeover or a shopping spree.
“I just want to give them something fun and positive to focus on and give their parents a chance to see the kids just being kids,” says Tiffany. “They’re given these diagnosis that are, you know, far beyond their years. They’re really forced to grow up so fast and it’s really hard.”
Tiffany shares how brainstorming with her friend Hayley Bohan, who now sits on the foundation’s board of directors, helped her decide on room makeovers and shopping sprees as the foundation’s focus.
“She had asked me, ‘Well, what do you think would have brought Braedon the most happiness in those last five months?’ He was your typical teenager, he was obsessed with video games and technology. He wanted to be a YouTube star. He loved to spend money as most teenagers do. So immediately it just came to me,” says Tiffany. “A room makeover, someone coming in and decking out his room with all this cool stuff, or a shopping spree where he could just go out and buy a bunch of cool stuff. As soon as I said it, I was like, ‘Yes, this is absolutely what we would do’.”
The Braedon Foundation has helped several New Brunswick children over the past year, with community support raising more than $20,000 for its efforts. The foundation is also helping Tiffany.
“It’s really become like a form of therapy for me,” she shares. “It’s been really hard, but also, I don’t know, really good for my mental health as well because it’s given me something so positive to focus on.”
“I definitely have those moments every day of waking up to heartache and feeling so lost, but I don’t want his life to become all about those final moments,” Tiffany continues. “I want it to stay about the wonderful 18 years that we had with him. I think for me, becoming my best self is now growing that foundation and keeping his memory alive and showing other people that no matter what you’ve been through, no matter how many times you fall, you can choose to stand back up again.”
“I’m not sure why I’m able to do that, but it’s honestly helped me,” says Tiffany. “Knowing that I have all these people out there whose lives would be made better by getting a day that’s all focused on them, seeing them go shopping and having a chance to just be a kid and be spoiled for a whole day, knowing that I have people out there that can benefit from that kind of stuff, really inspires me and it gives me a reason to keep showing up.”
Tiffany and the foundation’s board have plans to expand their programs, as well. “We’re hoping to launch a support group program,” she says. “We felt that the parents could really use and benefit from being connected with other parents who are going through the same thing, dealing with these unimaginable illnesses that the kids have.”
To follow the room makeovers and shopping sprees, or to support the foundation, visit thebraedonfoundation.com.
A version of this article originally appeared in Family 1st/Famille en premier, a free, bilingual quarterly parenting magazine published by Brunswick News, with Pickle Planet Moncton’s Jenna Morton as Contributing Editor.