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

When Bode Fox decided he wanted to raise money for the Children’s Hospital of Alberta (ACH), he turned to his mother Susanne for help.

“I talked to him and we said, ‘What goals should we set? ,” said Susanne Fox, a former communications officer for Global News. “’Do you think $500?’ And he said, ‘I think that sounds great, Mom.’

In hindsight, it was a rather modest goal and took almost no time to achieve.

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

With just a few hours left in the event, Bode had amassed over $33,000 or more than 6500% of his original goal.

“It makes me feel really good because they (the sponsors) haven’t even – they haven’t even heard of me,” Bode said. “That they take the time of the day and donate a few $100 makes a lot of sense.”

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“I couldn’t even believe what he was able to do,” said ACHF President and CEO Saifa Koonar. “He’s inspired those around him to give and this boy has done it and we couldn’t be more grateful.”

Bode has her own reasons for fighting to help the more than 100,000 sick and injured children who visit ACH each year.

Since last May, the 10-year-old has been battling a rare blood condition called aplastic anemia, a condition that makes him prone to uncontrolled bleeding and highly susceptible to infections.

Susanne explains: “This is a very rare blood disease and despite being very clever, it is bone marrow failure. “So the stem cells in his body are being destroyed and the stem cells are, you know, zero for all of us.

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

“He was at high risk of bleeding. A small bump will become a large hematoma on his body,” says Susanne. “His mouth was always bleeding. He has virtually no immunity to most things and a little cutting can lead to a high fever and sepsis within hours.”

“It was tough and I definitely learned a lot of things that I didn’t know about the body,” said Bode, who has undergone more than 50 platelet transfusions and nearly 20 blood transfusions in the nine months since his diagnosis. own body.

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There is no cure for aplastic anemia, but there are several different treatments.

Unfortunately for Bode, one of them – immunosuppressive therapy – didn’t work. This was followed by a stem cell transplant that was scheduled for March, but was delayed.

“We are very disappointed because… we are working so hard to keep him safe and there are delays every week,” said Susanne tearfully. “There are risks for him.

“It’s a pain in the ass.”

With the exception of twice-weekly hospital visits for blood transfusions, Bode has been under strict quarantine since May 2021. Pandemic caused by covid-19 made it difficult for even his parents to leave the house for fear of the virus entering the house.

“Having an immunocompromised child is one thing and having a child with the condition right now is another because it affects every aspect of his care,” says Susanne. . “When people complain about being quarantined for 14 days, I say, ‘This kid has been quarantined for nine months.’

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

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“He wakes up every day this week and reads texts, and it really lifts him up,” Fox said. “He got a real hit from it.

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

All funds raised are passed radio station will support ACHF in its efforts to fund research, education and technology at the children’s hospital in Calgary.

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“In terms of Children’s hospital, this hospital is nothing short of typical. Susanna said. “And it’s because of this community, and fundraisers like this, that make it so. So it wasn’t an accident.

“It’s a community that cares about children and that’s where our children get the best care.”

“I am so grateful for that and I cannot 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,” Bode added.