Arthritis can’t slow down 10-year-old MacGregor girl

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This article was published 27/07/2017 (3227 days ago), so information in it may no longer be current.

When Tori Hildebrandt was maybe five years old, she thought every child had arthritis.

“She didn’t realize that it wasn’t just everybody who had it,” said her mother, Kristen. “It was just really normal for her.”

The MacGregor child’s understanding of arthritis conflicted with many adults, who figured children are incapable of developing achy joints.

Take Tori’s mother, for example.

“Any time I told somebody’s new, that’s the general response: ‘I didn’t know kids could get arthritis,’” Kristen said. “People are very shocked to hear that. We were shocked. Until she was diagnosed, I didn’t know kids could get it either.”

The rarity of juvenile arthritis made Tori, now an active 10-year-old, a shining example of how to make the most of a diagnosis normally recognized with slowing senior citizens down.

Tanya Misseghers, a spokesperson with the Arthritis Society, Prairie Division — Manitoba/Nunavut, is thrilled to have a family like Tori’s busting the myth that children cannot get arthritis.

Misseghers said it breaks their hearts to hear stories of children with arthritis who were initially misdiagnosed.

“It means so much to have a family like the Hildebrandts being engaged and being a part of our events.”

This includes taking the mantle of ‘Hero Family’ at the Brandon Walk to Fight Arthritis last month at the Riverbank Discovery Centre. Dressed in blue, ‘Team Tori’ looked like superheroes, running around with their capes flapping.

Participating in these fundraisers is an easy decision for the family, Kristen explained.

“It’s something we could support and get the word out there, let people know that kids can get arthritis,” she said. “It’s not a well-known thing, but I bet you everybody in our town knows it now.”

But if somebody met Tori for the first time, playing in the school playground, they wouldn’t know her diagnosis.

“When she was younger, we could tell, she couldn’t keep up to other kids on the playground,” Kristen said. “But I don’t see that as much now, she’s caught up.”

At the age of two, Tori was diagnosed with juvenile arthritis — specifically, polyarticular juvenile rheumatoid arthritis, an autoimmune disorder causing joint pain that may result in chronic fever and a shortage of red blood cells. Many children eventually outgrow the disease.

Tori’s parents first noticed something was off around their daughter’s first birthday, when she wasn’t walking as readily as other toddlers.

A physiotherapist got her taking her first steps, but her knees would lock up unexpectedly. She saw a couple specialists until the proper diagnosis was obtained, 29 months into her life. The disease was active then in 29 joints.

“I remember being relieved actually that we had a diagnosis for it — because until then, we didn’t know what was wrong,” Kristen explained.

Tori was placed on medications, aimed at eradicating the flare-ups most commonly felt in her knees, though present in her wrists, ankles and elbows as well.

The treatment has done wonders.

For the most part, she’s kept her pain at bay. And thus she can play hockey, soccer and the piano like any other child.

Her worst hurdle to overcome is a weekly injection of methotrexate, a drug that makes her feel nauseous and sometimes causes her to vomit.

Yet each week she comes back for more, because she knows she must.

“I don’t like the needles I have to take,” Tori explains when asked what having juvenile arthritis is like. She said, however, these setbacks don’t make her sad.

“She’s kind of grown up with it, and I have to say she handles it extremely well,” her mother adds. “It’s really the only life she’s ever known.”

Kristen and her husband Dustin have sacrificed for Tori’s diagnosis. Many days off work due to medical appointments in Winnipeg, and many sick days for Tori as well. For a while, Tori could not be immunized because of the drugs she was on.

Some children are known to have their arthritis enter remission close to Tori’s age, though sometimes it flares up in the future, related to growth spurts or stress.

The family does not know how Tori, entering Grade 5 this fall at MacGregor Elementary, will take to the disease in the future. But if the past is any indication, the family is convinced their daughter will handle it gracefully.

“She’s grown up with a very positive attitude, and I think that will carry her through very well.”

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