8-Year-Old With Several Rare Genetic Conditions Wins Over TikTok With Her Infectious Joy

 


 An 8-year-old with special needs is stealing hearts all over the internet with her hilarious videos on TikTok. Bella Thompson of Saskatchewan, Canada, was born with three separate conditions that have kept her in-and-out of the hospital for most of her life, but watching her videos you would almost never be able tell. Bella lets nothing get her down and now people are calling her “Bella the Brave.”

Bella’s mom, Kyla Thompson, shares video updates of Bella’s condition, as well as small snippets of her life.

The mom, who is Bella’s full-time caretaker, shares the videos on the @Kylact TikTok page. The two first went viral in January 2021 with a video where Bella showed off one of her favorite hobbies — drawing. And ever since, Bella and her mom have had a loyal audience of people who want to know more about the 8-year-old’s story.

“TikTok is where we post all the happy stuff we do in our family,” the mom explained to the Daily Mail.

But it all started with the mom’s hope to educate people about Bella

Kyla and her husband, Lyle, first learned that Bella had serious medical conditions when she was younger.

The mom recalled the moment they learned of one of Bella's conditions soon after she was born.

“We were told that Bella suffered from a bowel disease called Hirschsprung, where parts of the colon are dead,” the mom told the Daily Mail.

“The condition is caused by a genetic mutation and in the first eight months of her life, Bella had three operations to remove the dead parts of her bowel.”

Bella was diagnosed with SCID when she was 11 months old and at 15 months received a bone marrow transplant after spending two months in isolation to help make sure she didn’t get sick. Her CHH was also diagnosed around this time.

"The real reason I started posting was that I wanted to educate people about what we were dealing with because I knew that, in turn, would better protect Bella," the mom explained.

“People can be mean and say hurtful things when they don't know or understand something,” she added.

“I didn't want anything happening that would make her feel bad about herself, so using social media is my way of protecting Bella by helping people to better understand what she has to deal with,” she said.

 

The mom explained that Bella also has to sleep with an IV drip to ingest her food and get the nutrients she needs.

Her CHH also means that she’s about the height of the typical 1-year-old, Kyla explained in a video from February 11, 2021. And her condition causes her to have sparse hair growth and light colored hair, the Daily Mail noted. Her doctors don’t know if she’ll keep growing, but believe she could grow up to be 4 feet tall.

In total, has had 21 surgeries and is on the waitlist for a bowel transplant, Good Morning America reported. 

But on TikTok, Bella is probably best known for her sparkling personality.

In fact, a video of Bella sharing what she packed for an upcoming trip to the grocery store in her “kitty bag” recently racked up over 73 million views. But Bella isn’t shy in front of the cameras.

“She has always had this confidence about her which my husband says she gets from me,” Kyla told the Daily Mail.

“When I took her out of the hospital as a baby for a walk around the grounds, people would stop and admire her and ask if they could hold her,” she added. “Because she was my firstborn, I didn't know if that happened with all new babies or if there was just something special about Bella.”

“When she was in the newborn babies' intensive care unit she had a cot by the door and would beam at anyone who walked in,” she continued. “It was like she was the cheerful meet-and-greeter from the moment she got here.”

Bella’s video even caught the eye of singer Halsey, who sent her a special care package all the way up to Saskatchewan

The pop star's attention shouldn't be a surprise to anyone.

“Bella just exudes joy which is why she is so inspirational and TikTok is our happy place,” Kyla explained. "Although we do show the nitty gritty of Bella's everyday medical challenges on Instagram, too.”

The mom said that Bella is used to being in the spotlight, as she spent the first two years of her life in the hospital with “groups of 15 adults standing around her bed discussing her and to being the center of attention,” she explained.

When Kyla and Lyle decided to try for their second child, they were told that there was a 1 in 4 possibility that the child would have the same medical conditions as Bella.

So they decided to conceive using IVF and screened the embryos for genetic faults before they were implanted.

“We ended up with five embryos,” the mom recalled to the Daily Mail. “Of those, one had the same conditions as Bella, two were not fit for implantation and three were suitable, so we had one of those implanted and that resulted in our son, Waylon, who's now 3.”

 

Kyla said Bella was her "biggest cheerleader" when she was trying to get pregnant.

“She wanted a little brother and she got one,” Kyla said. “They really love each other.”

Unfortunately, Kyla miscarried with the two remaining embryos, but she is more than happy with her small family.

“We are so fortunate,” she said. “We have a little girl and a little boy and some people don't get that.”

The Thompsons are hoping to keep things as normal for Bella as possible as she gets older.

Bella is now double-vaccinated and has since been able to return back to school with her friends. But of course, if a bowel transplant becomes available, she’ll have to isolate again.

“She loves school, especially science and math and PE,” her mom said. “If she does have to be kept at home again she will miss her friends, but we will have to do what the immunologists tells us to.”

It's certainly not been easy, however, and Kyla admitted she doesn’t think people understand the real sacrifices “medical families like ours have to make or what we go through.”

“One of my big hopes about using social media to tell Bella's story is that we can help other families going through similar things, because the way to get people to understand better is to educate them,” she said.

Since sharing their story online, Kyla said she’s been shocked by how many people have grown to care about Bella’s journey.

"It just blows people away," she told GMA. "I realized that she is just happy and bubbly and outgoing no matter the amount of surgeries … she's so well-spoken and will talk to you like she's your best friend the moment she meets you."

But that doesn’t mean that the 8-year-old doesn’t understand that every day is a gift.

"Technically, Bella is not even supposed to be here — and she knows that,” the mom told the Daily Mail. “But here she is, spreading so much joy and inspiring others. She has shown us what really matters in life."

 Source: cafemom.com


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