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Calgary boy battling rare disease brings in big money for Alberta Children’s Hospital fundraiser

"Within like, 24 hours, it was like poppin!" Susanne Fox on son Bode's fundraising page.
Click to play video: 'Calgary boy raises over $30k for Country 105 Caring for Kids Radiothon'
Calgary boy raises over $30k for Country 105 Caring for Kids Radiothon
WATCH: While he is in the fight of his life, a young Calgary boy is also battling on behalf of other sick kids in southern Alberta. Ten-year-old Bode Fox, the son of former Global News anchor Susanne Fox, set a goal of raising $500 at a local radiothon. But as Deb Matejicka reports, he is far exceeding his own goal. – Feb 4, 2022

When Bode Fox decided he wanted to raise money for the Alberta Children’s Hospital (ACH), he looked to mom Susanne for help.

“I talked to him and we said, ‘What should we set for a goal?'” said Susanne Fox, a former Global News anchor turned communications expert. “‘Do you think $500?’ And he’s like, ‘I think that sounds awesome, mom.'”

In hindsight, it was a fairly modest goal and one that took barely any time to reach.

“Within like 24 hours, it was like poppin!” said Susanne, who reached out to family and friends to support Bode’s participation in the 19th Annual Country 105 Caring for Kids radiothon in support of the Alberta Children’s Hospital Foundation (ACHF).

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With just hours left in the event, Bode had amassed more than $33,000 or over 6500 per cent of his initial goal.

“It makes me feel really good because they (donors) don’t even — they haven’t even heard of me,” said Bode. “That they take time out of their day and donate a couple $100 means a lot.”

Click to play video: '2022 Country 105 Caring For Kids Radiothon raises $2.25M  for Alberta Children’s Hospital'
2022 Country 105 Caring For Kids Radiothon raises $2.25M for Alberta Children’s Hospital

“I just can’t even believe what he’s been able to do,” said ACHF president and CEO Saifa Koonar. “He’s inspired people around him to give and this this young boy has done this and we couldn’t be more grateful.”

Bode has his own reasons for fighting to help the more than 100,000 sick and injured kids that visit ACH each year.

Since last May, the 10-year-old has been battling a rare blood disease called aplastic anemia, a condition which leaves him prone to uncontrolled bleeding and extremely vulnerable to infection.

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“It’s a very rare blood disease and, big-umbrella wise, it’s bone marrow failure,” explained Susanne. “So the stem cells in his body are being destroyed and stem cells are, you know, ground zero for all of us.

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“We don’t know what caused it but we know that his body is destroying his stem cells as quickly as his body’s trying to make them.”

“He’s at high risk of bleeding. A little bump becomes a large hematoma on his body,” said Susanne. “His mouth is always bleeding. He has almost zero immunity to most things and a little cut can lead to a spiked fever and a blood infection in a matter of hours.”

“It’s been hard and I’ve definitely learned a lot of stuff that I didn’t know about my body,” said Bode, who has undergone over 50 platelet transfusions and nearly 20 blood transfusions in the nine months since his diagnosis.

Click to play video: 'New technology key to releasing kids who are ‘locked in’ their bodies'
New technology key to releasing kids who are ‘locked in’ their bodies

There are no known cures for aplastic anemia, but there are a few different treatments.

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Unfortunately for Bode, one of them — immunosuppressive therapy — didn’t work.  Next up is a stem cell transplant that was scheduled for March, but has since been delayed.

“We are disappointed because… we’re working really hard to keep him safe and every week there’s a delay,” Susanne said through tears. “There’s risks to him.

“It’s gut wrenching.”

Except for his twice-weekly hospital visits for transfusions, Bode has been under strict isolation since May 2021.  The COVID-19 pandemic has made it difficult for even his parents to leave the house for fear of introducing viruses into the home.

“It’s one thing to have an immunocompromised child and it’s another to have a child in this state right now because it’s impacting every facet of his care,” said Susanne. “When people complain about being in quarantine for 14 days, I’m like, ‘This kid’s been in quarantine for nine months.'”

Despite the setbacks and daily challenges, Fox said the fundraiser was a really good and positive distraction for her son.

Click to play video: 'Calgary grandmother rallies around radiothon to help bring in better neurosurgical equipment'
Calgary grandmother rallies around radiothon to help bring in better neurosurgical equipment

“He’s gotten up every day this week and read the messages, and it’s really kind of lifted his spirits,” said Fox. “He’s got a real kick out of it.

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“He can’t wait to talk to his doctors and nurses and tell them how much money has been raised for this.”

All money raised through the radiothon will support the ACHF in their efforts to fund research, education and technology at the children’s hospital in Calgary.

Click to play video: '2022 Caring for Kids Radiothon'
2022 Caring for Kids Radiothon

“In terms of the Children’s Hospital, there is nothing typical about this hospital. It is extraordinary in absolutely every way,” said Susanne. “And it’s because of this community and fundraisers like this, that make it so. So that’s no accident.

“It is a community that cares for children and because of that our children are getting the best care.”

“I’m very grateful for it and I can’t explain how good the nurses and doctors are there. Some of them are the best in the world. And I feel really, really safe there,” added Bode.

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