This 5-year-old girl with a rare disease is representing sick kids across Sask. this year

A five-year-old Regina girl, named 2026 Champion Child by the Jim Pattison Children’s Hospital Foundation, is sharing her story. Damian Smith has the stroy.

A five-year-old Regina girl who was named the Jim Pattison Children’s Hospital Foundation Champion Child for 2026 has come a long way since her first stay at the hospital.

Ivy Brodner was four years old when she was diagnosed with juvenile dermatomyositis, a rare autoimmune disease that causes inflammation of the skin, muscles, and blood vessels.

Getting the diagnosis

Getting the proper diagnosis was no easy feat, however, as doctors had to do a series of tests to figure out what was wrong.

Ivy first started experiencing fevers on and off for a full year, her mom, Shandra Brodner, explained.

“The symptoms after the fevers were pain episodes. I was working, and I got a call from her dad saying she was in quite a bit of pain, not able to move very much, was just in her bed,” she said, noting that at first she attributed it to growing pains.

During a gymnastics class the next day, Ivy let out a scream. Her teacher thought Ivy had broken something and wanted the family to get it checked out.

“We ended up at the Pasqua [Hospital], and at that time, she was having troubles walking, and they had thought it was her joints and diagnosed her with juvenile arthritis,” she said.

However, Ivy’s condition did not get any better after that.

“We’d gone home and it just progressively got worse,” Brodner said. “She wasn’t able to lift her arms, her leg muscles, it almost felt like a tennis ball. They were all kind of bunched up.”

So, the family went to the General Hospital for more testing and a treatment of IV fluids.

“With juvenile dermatomyositis, it also affects her veins, skin, everything, so she couldn’t keep an IV which in turn caused a level called CK,” Brodner said, noting that Ivy’s bloodwork showed upwards of 15,000, compared to the normal level of 60 to 160.

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Since Ivy could not keep an IV, she was taken down for an emergency central line placement which goes right near her heart so she could get the fluids she needed. However, things did not work as planned.

“It also affected her kidneys, so it was kind of a whole process there, and then from there, the pain would not subside,” Brodner said.

At that time, Ivy was diagnosed with viral myositis. Although similar to what she experiences with her condition, the diagnosis was wrong.

“So, kind of the same thing that happens with her, but it happens with viral illness. Her muscles get weak, they get those enzymes that build up, and they just need kind of fluids overnight, and never happens again. But in Ivy’s case, over the course of a week, it just continued to get worse, and those treatments didn’t work here in Regina,” Brodner explained.

Ivy was then transferred to the Jim Pattison Children’s Hospital in Saskatoon to get further tests done with a pediatric specialist.

When the family got to Saskatoon, Ivy completely lost her mobility and was only able to move her eyes back and forth, her mom said.

“Every muscle in her body was quite inflamed, including her throat muscles to swallow. So, at that point, she also had to be tube fed for five months total, no anything by mouth, no water, no food,” she explained.

“They did surgeries, tests, medications, all of the things there, and nothing was working at that point. So, they had tried a medication that’s a chemotherapy called cyclophosphamide, and that seemed to work really well, and that was kind of one of the key treatments in juvenile dermatomyositis.”

After a 31-day stay at the children’s hospital, Ivy was officially diagnosed with juvenile dermatomyositis, and the family was able to come back home to Regina. However, Ivy had to stay at the General Hospital for another two weeks before she was able to sleep in her own bed.

A lifelong illness

Juvenile dermatomyositis affects about two to four children per million worldwide every year and currently has no cure.

“On days like today, she looks completely good, she’s able to walk, but there will be days where her skin is so inflamed that she itches all day, or her muscles are very sore, and she actually can’t do our stairs,” Brodner said.

“Everyone can look okay on the outside, but what’s going on on the inside is something that many people don’t know, and especially with it being rare, people already don’t know what the disease entails and lots of it is, unfortunate, extreme pain at times.”

While the disease is something that Ivy will have to deal with for the rest of her life, Brodner said she has hope that a cure can be possible.

“Technology is coming a long way and there are some possible cures on the horizon for the disease, so that’s a fortunate thing we can look forward to.”

Although there is no cure, Ivy’s disease is now manageable through regular visits to the Jim Pattison Children’s Hospital.

“I love them,” Ivy said about her nurses. “Thank you for helping kids just like me.”

Ivy uses her Beads of Courage to track her hospital stays, the number of times she has to get a needle, among other procedures, with each colour signifying a different thing.

Her mom said Ivy is up to almost 1,000 beads in total.

Now that Ivy’s disease can be managed, she has gotten her spark back and can continue doing some of her favourite things, which includes playing games with her sister Nia and gymnastics.

“Everything in gymnastics I love,” Ivy said. “I love the balance beams. My favourite thing is doing the monkey bars.”

Representing sick kids across Sask.

Ivy was announced as Jim Pattison’s 2026 Saskatchewan Champion Child at the end of February.

As part of the Children’s Miracle Network Champions Program, Ivy will spend the year representing sick and injured kids across Saskatchewan, having already taken part in a few events prior to being named Champion Child.

“We had done a few events with [the Jim Pattison Hospital Foundation], we had to go to Wal-Mart, and for their fundraising, she got to go to Costco, and she called herself Costco girl for awhile, so that was pretty exciting for her,” Brodner said.

After that, the foundation reached out to chat about the Champion Child position, which Brodner said is a good opportunity to talk about Ivy’s diagnosis and give back to the organization by fundraising.

Ivy and her family are now looking forward to taking a trip to Florida to meet other kids who have also been named ambassadors for children’s hospitals around the country.

When asked what she is most looking forward to as the Champion Child, Ivy’s answer was simple.

“I’m excited about everything,” she said.