A beloved Canadian nine-year-old, known as Bella Brave to those on TikTok, underwent a life-saving bowel transplant after a three-year wait for a rare disease she has been fiercely battling since birth.
“We were so used to living in fear and not knowing if she would survive without this transplant,” Kyla Thomson said about her daughter in an interview outside the Hospital for Sick Children in Toronto.
Bella Thomson, known to 6.3 million TikTok followers as Bella Brave, was born with a genetic spontaneous mutation of three rare diseases – Severe Combined Immunodeficiency (SCID), Hirschsprung’s Disease and Dwarfism – that left her with no immune system and a dead bowel.
“I’m just still in awe of the way she looks at the world. She could be so angry and bitter … and she does the opposite, and it just blows me away,” Thomson said, her voice breaking as she described Bella’s bravery. “To be that proud of my daughter, it makes me cry.”
‘NO ONE COULD FIX IT’
At just three days old, the Saskatchewan-born miracle child underwent her first surgery — a count that would amount to approximately 30 operations with her first two years of life spent in hospitals in Saskatchewan and Alberta.
Since then, Bella has received a bone marrow transplant and suffered septic shock four times – two of which healthcare professionals told Thomson they couldn’t explain how she survived.
“Within Bella's first year of life in hospital, everything being so rare, so painful, so exhausting living in hospital. I was very angry watching my firstborn go through this and then not have anyone tell me how to fix it. No one could fix it,” Thomson said.
But her pivot to positivity came with a perspective that evolved as she saw moms, dads and caregivers at the hospital that had it worse. “Some didn't get to bring their little ones home, and I did,” she said.
‘WE WILL NOT LOSE OUR BRAVE’
Just a few months ago, the Thomsons received news they had dreaded. A live-changing bowel transplant was no longer safe for Bella. “There’s nowhere to go from here,” Thomson said in a video posted in June.
It was an emotional pill to swallow, but the Thomsons, including Bella’s 4-year-old brother Waylon and father Lyle, kept creating videos for their TikTok account that almost immediately went viral after posting Bella’s first video around early 2021.
Bella's feed is filled with her dancing in hospital hallways and strutting towards the camera with a hand gripping her hip, while her mom wheels an IV pole behind her. “We will not lose our brave,” they pledge in their videos.
“We wanted to spread joy, make people laugh. That was our goal. For us to be able to expand on our advocacy for medical families and kids with rare diseases … It’s so heartwarming,” Thomson said.
In mid-August, while eating lunch at home in Swift Current, Sask., Thomson received a phone call. After three years on the transplant waitlist, it was finally time. The team at SickKids had found a collateral vessel that made the transplant possible.
“[It meant] a lot,” Bella said over a Zoom call on Tuesday while sitting on her hospital bed, recalling the rapid events that recently transpired.
That night, they flew more than 2,000 kilometres to Toronto and within days, Bella underwent surgery.
Doctors warned the Thomsons that the bowel transplant could take 10 to 20 hours. But for Bella, it took eight.
She surpassed her physiotherapist’s goal of standing for 10 seconds just days after her surgery. Instead, she was walking and feeding the pigeons outside the hospital. “It was so good,” Bella said.
Over the next three months to a year, Bella will slowly introduce new foods to her diet, with oatmeal already added to her roster and oranges and popcorn at the top of her wish list, while reducing IV fluids.
“It’s a miracle that she survived,” Thomson said. “We just take it day by day.”
