In memory of Jonny
The Jonathan Brown Foundation is hosting a gala Nov. 9 to raise $250,000 for a teen room at the future children’s hospice now under construction in Dundas.
Claudia and Allan Brown are transforming their profound grief into action that will help other teens and families who are facing terminal and life-changing illnesses.
The Browns lost their son Jonathan to Ewing’s sarcoma in 2021 at the age of 19.
He was their middle child – easy-going, athletic, smart and funny. His parents can’t quite comprehend his strength as he faced difficult and painful treatments while continuing his studies. He didn’t complain or get angry. He didn’t even allow himself to cry.
“I think we recognize that more and more, you know. When you're living it, you just, you don't even get a chance to breathe, you know, and then afterwards, you think, oh my gosh, he was incredible,” says Claudia.
Jonathan, Jonny to many, had begun a math program at the University of Waterloo but had to drop out when his cancer returned. He would have graduated this year.
In his honour, the Browns, who live in Carlisle, formed the Jonathan Brown Foundation shortly after his death.
It is raising awareness about cancer affecting young people and generating financial support for services that directly impact these young people and their families.
In addition to offering scholarships for students facing medical challenges, the foundation hosts fundraising sports tournaments and major galas. A first gala in 2022 raised an impressive $230,000 that helped to renovate the oncology unit at McMaster Children’s Hospital. Now, the foundation is planning Jonny’s Gold Ribbon Gala for Nov. 9, aiming to raise $250,000 for a teen room at the future Keaton’s House Paul Paletta Children’s Hospice in Dundas.
Ground has broken on that project, with a target completion date in 2026.
“Every given day there's so many kids around here that are very ill or terminal. We want to do what we can to help,” says Allan.
“It's in part about Jonathan and keeping his legacy alive, but it's in part about enabling us to make something worthwhile out of this horrendous loss and help us get up every day,” says Claudia.
The galas are a labour of love for Jonathan’s family, many friends from hockey and high school, neighbours and the broader Flamborough community. This time, they are expanding their committee to other communities that will be serviced by the children’s hospice, including Burlington, Oakville, Brantford, Niagara, Cambridge and Kitchener-Waterloo.
This is the only region in Ontario with a dedicated children’s hospital but without a palliative care hospice serving kids and teens. It’s estimated that up to 1,000 kids in this region at any given time could be in need of palliative care.
Jonny was diagnosed at 17. As an older teen, he didn’t always fit in at the children’s hospital and he didn’t fit in in the recovery ward of Juravinski Hospital where he had surgery. The Browns knew that palliative care in one of Hamilton’s hospices was not going to suit his needs either.
But caring for Jonny in his last days at home proved too difficult. He was six-feet tall and his cancer caused enormous pain and a loss of mobility below his waist. So he was moved into the pediatric oncology unit.
The staff and the team at Quality of Life & Advanced Care program (QoLA Care) at McMaster Children's Hospital were wonderful to Jonny and his family but it wasn’t the place for them at the end of Jonny’s life.
“We were over in the corner, our kid was dying, and everybody else was really hopeful about their kids, you know?” says Claudia. “And then there's a lot going on in the hospital. There's sounds and alarms and people walking up and down, and it's just it's not conducive.”
Keaton’s House will provide for targeted end-of-life care in a beautiful natural setting with amenities that give dignity to teens.
“It will be set up like a home and there will be deck and places to get outside. It’s going to make those last few days, it could be weeks, you know, but make those last days a special chance to say goodbye,” says Allan.
The Browns are seeking gala sponsors and attendees, as well as donations for raffles and auctions. The event will feature speeches from palliative care practitioners, a gourmet dinner catered by Carmen’s Group, and live music.
The Browns, who have also raised daughter Rachel and son Michael, say their friends have rallied in every way to support them and the foundation.
“Nothing will replace Jonny but this helps,” says Claudia. “I’d give anything to have him back but if we can make a difference, that’s his legacy.”
They take comfort that Jonny, who was always a homebody, now rests in a church cemetery at the end of their street.
Buy tickets or donate here. For more information, contact jonathanbrownfoundation@gmail.com.