Surviving and thriving: 6-year-old Zianna is unstoppable, thanks to CHEO

Six-year-old Zianna lives with chronic pain but is now thriving thanks to the help of CHEO. CTV’s Kimberley Fowler shares her story.

Zianna loves to read. The six-year-old has hundreds of books and is also a writer herself. With her mother Rakhi by her side, the duo is unstoppable.

“Me and mom call each other the Ruparelia team, and there is a special thing we do to show it!” Zianna said, beaming, as she and Rakhi grabbed each other’s hands and began a coordinated cheer. “One, two, three, go Team Ruparelia, wooo!”

Zianna has been a patient at CHEO since days after she was born. “Everything that could go wrong, went wrong,” explains Rakhi.

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In the blink of an eye, after what was considered a normal pregnancy, everything changed the moment Zianna arrived. “I didn’t even know what was going on. I just knew that they were having difficulty getting her out, and when they finally did get her out, she had no vital signs at all,” recalls Rakhi.

Zianna was delivered by emergency C-section. Lifeless, she was rushed to the NICU at the Ottawa Hospital. It was unclear if she would survive. “So, Zianna as a name means bold and it suits her to a T,” mused Rakhi. “She was all connected to wires, and she had a CPAP machine to help her breathe. But in true Zianna fashion... she already decided that wasn’t for her and that she was going to breathe on her own.”

A few days later she was transferred to CHEO. “There was a team waiting for us and they were so welcoming and I just felt the sense of calm… I just knew that she was going to be well taken care of.”

At just six-months-old, Zianna had weakness and muscle tightness on her left side and started physiotherapy and occupational therapy at CHEO. Then, at three-years-old, another challenge, Zianna started feeling intense pain in her back. That’s something she still deals with every day.

“In pre-K, before I got medications, I was literally lying on the floor in class,” says Zianna, “I’d just lie on the floor in the hallway to try to get relief…everything would be fine if I didn’t have chronic pain.”

CHEO’s chronic pain clinic came up with a plan tailored to Zianna’s needs. Dr. Anna McCormick, CHEO medical director of developmental medicine and rehabilitation said, “We have a neurodevelopmental approach... there tends to be a ‘Triple P’ approach. So, there’s the physical, physiotherapy, and there’s the psychology and the emotional piece of having chronic pain.”

The team, in combination with medication, also gives Zianna the tools to help her get through pain flares. “A square breath you do this, and a rainbow breath you do this,” Zianna said, demonstrating taking a few deep breaths, holding them for a second and then breathing out.

This is the kind of specialized care provided by teams of experts at CHEO. “I think that every family hopes they won’t need the services of a place like CHEO and you don’t plan to need them,” said Rakhi, “and when you do, you hope that there is a place like CHEO available.”

The hospital is also growing. A new Integrated Treatment Centre is under construction, coordinating medical teams to provide life-changing care and help kids live their best lives. “When we envision rehabilitation in the future, we’re really engaging technology... there’s robotics, there’s brain-computer interface, there’s AI-driven technologies,” said Dr. McCormick. “We want to offer cutting edge treatment, cutting edge technology... and we can’t do that without support.”

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Thanks to your donations, kids like Zianna are constantly defying odds, and exceeding expectations. “Zianna has amazing abilities to listen to what’s being recommended and really put it into practice,” said Dr. McCormick. “She has come a long way, and I expect that her future is extraordinarily bright.”

“That’s really what Zianna’s done. She hasn’t just survived here, she has thrived,” said Rakhi, “I really don’t think she has any limits. I think this girl can do anything she wants…She doesn’t see herself as having limits. Why would I?”

With the care from CHEO, Zianna has built the foundation today for endless possibilities for tomorrow and beyond.

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.

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