Like many young Canadian kids, Blake McDonnell loves playing sports, but a recent medical diagnosis has taken the local tween from the ice and ball hockey arena to a hospital bed.
The Grade 6 Willow Landing Elementary School student was diagnosed with nephrotic syndrome focal segmental glomerulosclerosis, a rare kidney disease, in January 2023, his mother Samantha McDonnell told BarrieToday.
She described her son as an outgoing and athletic kid.
“He loves ball hockey and ice hockey to his core. He is a team player and likes to be there for everybody,” she said.
Blake was even one of the youngest players named to the Team Canada’s U13 ball hockey team, and travelled to Austria last year where he was tagged to be an assistant captain for the tournament, said his mom.
Unfortunately, due to his diagnosis and recent health complications related to the disease, Blake, who is set to turn 12 next month, has been benched from his favourite sports.
“He’s not allowed to play hockey. He’s not really allowed to do any activities. It’s changed his life immensely,” Samantha said.
Doctors attempted to get Blake into remission, she said, however treatments were unsuccessful, and last September, his kidney function began to decline rapidly.
Blake is now in stage five chronic kidney disease (CKD) — kidney failure — and has been on dialysis ever since.
While Blake had been undergoing peritoneal dialysis, which uses the lining of your abdomen, or belly, to filter your blood inside your body, and which he was able to do overnight from home, it is no longer working.
Doctors have advised the family that the youngster will need to start a new type of dialysis, Samantha said.
“They are making a change to hemodialysis because he just had a really scary episode where he had a bunch of fluid around his heart. They had to do an emergency surgery to put a drain in his chest. It was really bad,” she said.
Blake spent a week in the intensive care unit at Sick Kids Hospital in Toronto.
Prior to that, he spent another week in the hospital with pneumonia, said his mom.
“He’s not really catching a break right now. He’s not able to go to school with being so sick. He’s immunocompromised because of all the medication he’s on and because he is in kidney failure, so when he gets sick he gets it way worse than anybody else,” Samantha said.
The change in treatment means Blake’s dialysis can no longer be done at home, which means McDonnell, who runs her own cleaning business, or dad Tyler Kelly, who has taken time off from his job as a plumber to care for Blake, will need to travel to Toronto up to five times a week to ensure their son gets the care he needs.
In addition to the toll it will take on the family emotionally, between fuel, food and parking costs, the financial burden will add up quickly, she said, which is why news of a GoFundMe that has been created to help them cover some of the costs has left the local couple feeling “very grateful.”
“We were pretty surprised. We weren’t asking for a Go Fund Me or anything like that. Everybody knows we’ve been going through a struggle, because we’ve pretty much spent a month in the hospital in the last couple of months,” Samantha said.
“We are just hoping that it will help us with all of the travelling, and, of course, with only one of us being able to work, with just paying bills," she added.
"Financially it is draining. It’s nice to know that people have our back.”
While doctors are actively looking for a live kidney donor for Blake, even if a donor is located, a transplant won’t be able to happen until the youngster’s health improves significantly.
Samantha said doctors are planning to give the hemodialysis — where the dialysis machine pumps blood through the filter, cleans it and returns the blood to the body — a three-month trial to ensure it's working.
Blake is expected to undergo a surgery this weekend for a central line in his chest, and then his treatment can begin, she added.
Grandmother Brenda Kelly, who started the online fundraiser, told BarrieToday that despite everything her grandson has been through, he’s managed to keep a positive attitude.
“He still has a long road ahead, but he’s a positive, strong kid, even through these tough times,” she said. “Blake is a very kind, thoughtful kid even with all he is going through.
"I would change places with him in a heartbeat. He still has a pretty positive outlook, but I’m sure deep down inside he’s a sad little guy just wanting to get back to school and hockey," his grandmother added.
The family is remaining hopeful that this new treatment will get Blake to the place he needs to be in order undergo a transplant in the not-too-distant future.
“He’s missing out on so much of life. He’s only 11,” Brenda said. “It sucks to watch him go through this and be in so much pain that it would just be nice for him to have his life back.”