GORE BAY—While the organizers of the annual Frosty Cup Benefit Hockey Tournament are gearing up for the event, coming up with a list of names of those who will benefit from proceeds raised this year, a Kagawong family has expressed how grateful they are for the support they were provided by the Frosty Cup proceeds, as well as the community, to help the family through the first year of their son’s battle with Childhood Nephrotic Syndrome.
“In the first year of his (Gabe) diagnosis we were blessed with monetary help from the community, including the Frosty Cup, to help pay some of the expenses. I cannot express how incredibly grateful we were, and still are, to have received that support,” wrote Stephanie Burt Hillyard.
“November 2023 marks the fifth-year anniversary of Gabe’s diagnosis,” wrote Ms. Hillyard. She said she and her husband Dave, “thought it would be a small, short blip in our lives has been something that affects our every day.” She explained that in November 2018, Gabe was diagnosed with Childhood Nephrotic Syndrome, a rare and incurable kidney disease. He was two at the time, his little brother Gil four months.
“In 2019, Dave, Gabe, Gil and I spent two weeks living in hospitals, being transferred from our local emergency room to Health Sciences North Sudbury to Sick Kids Toronto,” said Ms. Hillyard. “It was at that time that Gabe received a kidney biopsy.”
“The pandemic was really hard. With his weakened immune system Gabe’s team wanted him away from the public. This meant I (Stephanie) had to take a leave from work to care for him, since daycare and school were out of the question. We had a very small group of people we interacted with and took extra precautions when we had to be out in public. I was off work from March 2020 until September 2021, working only part-time when Dave was able to stay home with the kids. With Gabe’s weakened immune system, no one knew what kind of reaction he would have if he caught COVID. We stopped going to playgroup, daycare and church because we just couldn’t risk his health. Gabe was registered to start Junior Kindergarten in the fall, but on the advice of our doctors we switched to a home school curriculum for his first year.”
“Although we were socially isolated, the silver lining was the ability to spend lots of time in the backyard and frequent video calls with friends and family,” wrote Ms. Hillyard.
“In 2021 we spent two weeks in the peds wing at HSN-one in August and another in December. Both times it was just Gabe and I,” continued Ms. Hillyard. “With all the increases in pandemic rules Dave and Gil weren’t allowed to stay in the hospital with us. We spent a bit of Christmas Day on the phone with Sick Kids making a plan for Gabe. They let us have the day at home with family, but first thing Boxing Day Gabe and I moved back into a room in HSN. I have to hand it to the staff, there are few things worse than being in the hospital over the holidays, but they made sure we are always taken care of.”
“After trying two different medications, his team decided the next step was chemotherapy,” said Ms. Hillyard. “Gabe and I travelled to Sudbury twice for two separate rounds of chemotherapy in 2022. Of all the treatments we had tried, this was the one that terrified us the most. What kind of lasting effects would it have? Would it even work? Would he lose all his beautiful hair? We spent the night in the hospital as they wanted to monitor Gabe overnight. The next morning they thankfully gave us the all clear to go home. Other than being exhausted, he was in good spirits and his team was happy with his progress.”
“The advancements in medicine and technology have been a huge benefit to Gabe. We trust our team of doctors and nurses and the medications he’s been able to receive. There is something special about doctors and nurses who work with kids, I cannot say enough about their kindness and compassion while we’ve been in some of the darkest and hardest moments of our lives,” said Ms. Hillyard.
Scott McDougall, one of the members of the organizing committee for the Frosty Cup told The Expositor, “I think we decided potentially we came up with some names that will receive support through this year’s tournament. And for the first time the recipients will not only be from the West End of the Island, but this has expanded to Central Manitoulin west.”
With the proceeds raised last year through the tournament, the organizing committee members and the Gore Bay Rotary Club and the Royal Canadian Legion Branch 514 in Gore Bay, “were in the enviable position (last year) of being able to give away $20,000, so we provided four people with $5,000 each,” said Mr. McDougall. “We like the idea of providing support to four people, and we think that we will be able to achieve the $20,000 figure again this year.”
At the organizing committee meeting bringing forward names of potential recipients who could receive support from this year’s tournament, everyone agreed with choosing the four people. “Two are from Central Manitoulin, one is off-Island and one is a local (Western Manitoulin) resident, but they all have strong roots to Manitoulin and have supported minor hockey,” said Mr. McDougall.
The Legion will again be hosting a fundraising dance on December 16, and the Gore Bay Rotary Club will be manning the bar at the Gore Bay arena the entire weekend of the tournament, to be held December 15-17.
As for Gabe, Ms. Hillyard reported, “currently Gabe seems to be stable. He still has almost no B cells and his immunity is low so something seemingly simple like a cold can knock him flat. He is on CellCept and iron supplements as well as a multi-vitamin. His medications alone costs between $600-700 a month, with travel expenses. Work benefits cover a portion of medication costs and we always submit travel grants, but it’s still a large extra cost we’ve learned to adapt to.”
“It’s still day to day,” said Ms. Hillyard. “We visit Sick Kids quarterly, although since the pandemic they’ve allowed us to do some of our visits remotely. At least once a year we drive to Toronto for a yearly checkup by his team of nephrologists, the others are via a video call. We also have frequent correspondence with them via email and phone. Once a month Gabe goes for bloodwork at our local clinics, and roughly every six months to Sudbury for a full day of bloodwork, where they draw blood every hour or two for most of the day. It’s a lot of waiting but we’re used to it now. We bring books and Lego, cuddle up and watch movies and eat lots of snacks.”
“Gabe is the absolute best,” stated Ms. Hillyard. “He is a voracious reader, Lego builder extraordinaire, best big brother and the absolute sweetest kid. He’s been dealt some pretty big concerns but he takes them all in stride. I have no idea what the future holds, but I’m hopeful for the future. We have an amazing community and an equally amazing kid.”
