TikTok's Bella Brave, 9, Still Hoping for Life-Saving Bowel Transplant: 'She Just Wants to Spread Joy' (Exclusive)

In viral videos, Bella's mom Kyla chronicles her daughter's upbeat spirit in the face of multiple life-threatening diagnoses

Bella Thomson is known as "Bella Brave" to her 6.2 million TikTok followers, but the 9-year-old also has another name, inspired by her superhero alter ego: "I'm Super Sparkle!"

It's a fittingly exuberant moniker for the TikTok sensation, whose upbeat spirit in the face of multiple life-threatening diagnoses has endeared her to millions. Bella's mom, Kyla, 40, showcases their adventures together on TikTok as @kylact. “Bella knows bravery is a superpower," says Kyla. "It’s all she has ever known. She’s always been my superhero.” Adds Bella of her alter ego: “She helps remind people they are perfect just the way they are.”

The size of a two-year-old, Bella weighs less than 30 pounds and stands just under 3 ft. tall. Kyla says her daughter has never been insecure about her appearance. “Bella has had confidence spewing out of her since she was born,” says her mom. “She’s never had self-esteem issues about the way she looks — ever. But I’m always on guard because of her dwarfism.”

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Kyla knows people can be quick to judge. “Bella edits the videos,” she says. “She would tell me if she doesn’t want to show something. She never looks at herself and says to me, ‘Don’t post that because my face is puffy.’ Bella doesn’t care!”

Born in Swift Current, Saskatchewan, Canada, in 2013, Bella was diagnosed with Hirschsprung’s disease, a rare bowel disease that affects her intestines. She also has severe combined immunodeficiency (SCID). Since her birth, Bella has spent more than 1,000 days in the hospital, (Kyla stopped counting a year ago), and she has undergone nearly 30 surgeries, including a bone-marrow transplant in 2015, and survived four septic shock infections, two of which nearly killed her.

Now Bella faces yet another daunting hurdle: She has just recently been re-listed for a bowel transplant that her doctors and top surgeons in Canada have ultimately determined — after previously aborting the transplant in May as too dangerous — is her only path for living a long life. “She knows a new bowel will allow her to eat whatever she wants,” Kyla says. “And she knows it will mean a new quality of life for her.”

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Every day, Kyla tries to make fun memories for her daughter often sharing them on TikTok. “Bella is like, 'Let’s do it! Let’s make a video today,' " says Kyla, who is also mom to son Waylon, 4. "She thinks people love her personality and she wants them to know her passions and what brings her joy. She just wants to spread joy to other kids and anyone else.”

As the family — which includes dad, Lyle, 37, who works in land management in addition to running the family’s tree farm — enjoy the last weeks of summer, they must always be within WiFi reach. “You never know when that call is going to come that they have a bowel that is right for Bella,” Kyla says.

When not home in Saskatchewan, they are on the road in their 30-ft.-long trailer, visiting relatives, resting by the lake and building sandcastles by the water. Recently, Bella has appeared visibly swollen, which has concerned her followers. Kyla explains: “Everyone has protein in their blood vessels, but you lose protein when you have a bowel disorder like Bella’s. She’s now getting protein infusions every two weeks at a hospital near us that take four hours.”

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As ever, Bella remains upbeat. “My hero is Barbie," she tells PEOPLE. "We look alike. She’s blonde and I’m blonde.” She says that she’s hoping this summer that their family grows in numbers. Besides cats Rodger, and kitty siblings Cat Sajak and Vanna Meow, Bella says, “I would love a bunny. A dwarf bunny, so it’s small like me.”

Kyla says that she and Lyle have not talked to their daughter about worst-case scenarios with their young daughter. (The transplant, should it happen, is extremely high risk.) “Bella’s always so positive," says Kyla, "so I don’t want to cause her any fear. She’s wise beyond her years and knows what a bowel transplant can do for her. She knows she’ll get the sleepy medicine. She’s still so innocent about survival. I’m waiting to give her reason to fear. But Lyle and I are also ready to answer her questions.” 

As for Bella's own mantra, which she shares frequently on TikTok: “Wherever I may go, whatever I may go through, I’m going to bring my brave, my style and my fun!”

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