‘We got our Charlotte back’: CHEO treatments help young girl manage rare disease

CTV’s Natalie van Rooy shares how CHEO helped diagnose and treat Charlotte’s rare disease.

Charlotte seemed like a healthy and happy young girl until everything changed in 2025.

“She couldn’t stay awake, she couldn’t eat, she really couldn’t do the things that she wanted to do, and that was really hard as a parent,” said Laura Rabb, Charlotte’s mom. “She wasn’t eating, she was losing weight, and she was sleeping all day. It felt like we were losing our daughter and we didn’t know why.”

For months, her family struggled to find answers as Charlotte developed a persistent rash, her body hurt immensely, and she could barely move, despite being a very active girl only months prior.

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“‘She couldn’t go up the stairs, she couldn’t get in and out of the car, and she really couldn’t get out of bed,” said Rabb. “I was carrying her around like she was a baby and she was five years old.”

Charlotte told CTV News Ottawa that she felt extremely tired. “When they would touch me, I would be hurting and I couldn’t walk,” she said. “My tummy was hurting every single day, and I kept having nightmares and couldn’t sleep.”

Charlotte’s parents took her to the emergency department at CHEO.

“We finally got in touch with a pediatrician who put us on the track of being referred to a rheumatologist,” said William Parizeau Fillion, Charlotte’s father.

It was after that referral to Dr. Tala El Tal, a pediatric rheumatologist at CHEO, that they got the answers they needed.

“Dr. El Tal, the day that we saw her, was able to get us an MRI for Charlotte and it showed her muscles were full of inflammation,” said Rabb. “That is why she was so weak because her muscles were literally deteriorating.”

A diagnosis quickly followed the child’s testing. Her family discovered that Charlotte has juvenile dermatomyositis, known as JDM. It’s a rare auto-immune disease that affects only three children per million each year in North America, according to Dr. El Tal.

“It’s a condition where a child’s immune system that fights off infections gets confused and starts attacking their skin and muscle,” said Dr. El Tal. “This results in inflammation leading to muscle weakness and they often develop rashes around their eyes and around their hands.”

As Charlotte’s medical team was now armed with answers on what was causing her symptoms, the fight was on for her to get better. Charlotte started treatment right away.

“It is definitely crucial, especially starting these treatments early on because it prevents damage and damage is something that we unfortunately can’t reverse,” said Dr. El Tal.

Steroids, medication, and biweekly immunosuppressants delivered by IV infusions of plasma product started immediately.

“The IVIG treatments are from plasma that’s been donated, and it helps give her immune system a boost because her immune system is not working,” said Rabb.

The immunosuppressants then transitioned to monthly sessions as her condition improved.

Child life specialists made possible through donor support worked with Charlotte to help her overcome a fear of needles through medical play and coping tools.

“I was scared when I had the needle for the first time and I was crying and crying, but after it was all done, I had a fun time,” said Charlotte.

It’s the generous donations to CHEO that have made a world of a difference for Charlotte’s recovery and quality of life. The CHEO Telethon supports both the research to improve care and the specialized programming that helps kids be kids at CHEO.

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“CHEO is amazing,” said Rabb, as she wiped tears from her eyes. “I really can’t say enough good things about how much CHEO has helped us as a family and I really believe that we are getting the best care that we could.”

While there’s no cure for JDM, there’s hope that Charlotte’s case will eventually go into remission.

“Despite all the challenges, she definitely brought light into the room,” said Dr. El Tal. “Most of our patients in rheumatology have this resilience, but with Charlotte specifically, I think with her positive energy as well as the amazing family support, together it definitely plays a role in achieving these better outcomes.”

It’s because of donor support and medical staff at CHEO that the now six-year-old is excited to getting back to being a kid and not worrying about her condition.

“We got our Charlotte back,” said Rabb. “She is the same little girl that she was before all of this started.”

The family is now looking forward to summer adventures that Charlotte finally has the energy for.

“My favourite thing to do in my whole life is to explore nature,” said Charlotte. “I don’t even know what I want to do in the summer, it’s so new.”

The 43^rd CHEO Telethon continues all week on CTV News Ottawa, CTV Your Morning Ottawa and Newstalk 580 CFRA, with the grand finale on CTV Ottawa on Saturday from 4 p.m. to 7 p.m.

• Visit the CHEO Telethon hub for full coverage, more stories, and live streaming

You can make a donation to the CHEO Telethon online at www.cheotelethon.com or by calling 613-730-CHEO (2436).