'Bella the Brave', eight, born with condition making her size of one-year-old becomes TikTok star

14 mins read

[ad_1]

A tiny TikTok star whose inspirational videos have won her 4.5 million followers and 96 million likes in a year has been dubbed ‘Bella the Brave’ after charming fans, despite a cocktail of devastating health problems.

Bella Thompson, from Saskatchewan, is eight-years-old, but she’s still the the size of a 12-month-old baby, after being born with three debilitating genetic conditions, which saw her hospitalized for the first two years of her life. 

But her mother Kyla Thompson, 38, who is her full-time carer, and dad, Lyle, 35, who works in land management for the local council, could not be prouder of their eldest child whose first TikTok video of her drawing went viral, with 29 million views.

Former primary school teacher, Kyla, of said that the fun videos she posts serve a greater purpose for her family by helping people to understand her daughter’s challenges so that she doesn’t face cruel comments in the future.  

Tiny TikTok star Bella Thompson, eight, from Saskatchewan, whose inspirational videos have won her 4.5 million followers and 96 million likes in a year has been dubbed'Bella the Brave' after charming fans despite a cocktail of devastating health problems. Pictured: In the hospital in December 2021

Tiny TikTok star Bella Thompson, eight, from Saskatchewan, whose inspirational videos have won her 4.5 million followers and 96 million likes in a year has been dubbed ‘Bella the Brave’ after charming fans despite a cocktail of devastating health problems. Pictured: In the hospital in December 2021

Bella has to sleep with an IV drip as it is the only way for her to ingest food and take in the vitamins and nutrition she needs

Bella with her cat Rodger in February 2022. Diagnosed with three genetic conditions shortly after being born, Bella has to sleep with an IV drip as it is the only way for her to ingest food and take in the vitamins and nutrition she needs

‘TikTok is where we post all the happy stuff we do in our family,’ she explained. 

‘What people love about Bella on that platform is that she is so inspiring and is spreading so much joy, despite the medical challenges she has. 

‘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.

‘People can be mean and say hurtful things when they don’t know or understand something.

Bella has struggled with her health since birth, with a triple whammy of debilitating genetic conditions, which saw her hospitalised for her first two years including three operations in the first eight months. Pictured with her mother Kyla

Bella has struggled with her health since birth, with a triple whammy of debilitating genetic conditions, which saw her hospitalised for her first two years including three operations in the first eight months. Pictured with her mother Kyla

‘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.’

Diagnosed with three genetic conditions shortly after being born, Bella has to sleep with an IV drip because it is the only way for her to ingest food and take in the vitamins and nutrition she needs.

Currently on the waiting list for a bowel transplant, at school there is a nurse on the staff in case she needs medical care.

Kyla explained that Bella’s severe medical needs became apparent when she was just three-days-old. 

She said: ‘We were told that Bella suffered from a bowel disease called Hirschsprung, where parts of the colon are dead.

‘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.’

At 11 months, Bella’s parents were told she also has a chronic immune condition known as severe combined immunodeficiency (SCID) that means she could die from just catching a common cold.

Again the result of a genetic mutation, after spending two months in isolation in hospital, because she could not risk catching an infection, at 15 months old, she had a bone marrow transplant.

Bella and her mother in hospital in hospital in July 2020. Kyla said she decided to make the TikToks of Bella to help educate people because it would'better protect Bella', because'people can be mean and say hurtful things when they don't know or understand something'

Bella and her mother in hospital in hospital in July 2020. Kyla said she decided to make the TikToks of Bella to help educate people because it would ‘better protect Bella’, because ‘people can be mean and say hurtful things when they don’t know or understand something’

Mother Kyla Thompson, 38, left, who is her full-time carer, and dad, Lyle, 35, holding their youngest son Waylon, could not be prouder of their eldest child whose first TikTok video of her drawing went viral, with 29 million views

Mother Kyla Thompson, 38, left, who is her full-time carer, and dad, Lyle, 35, holding their youngest son Waylon, could not be prouder of their eldest child whose first TikTok video of her drawing went viral, with 29 million views

At 11 months, Bella's parents were told she also had a chronic immune condition known as severe combined immunodeficiency (SCID) that meant she could die from just catching a common cold (pictured with little brother Waylon in 2018)

At 11 months, Bella’s parents were told she also had a chronic immune condition known as severe combined immunodeficiency (SCID) that meant she could die from just catching a common cold (pictured with little brother Waylon in 2018)

Her third genetic condition, a form of dwarfism called cartilage hair hypoplasia, was also diagnosed.

The bone growth disorder which also causes sparse hair growth and light-coloured skin means she still has the physical build of a one-year-old. 

Doctors don’t know if she’s going to keep growing but believe she may one day reach 4ft tall. 

First posting about Bella’s health challenges and their lives as a ‘medical family’ on Facebook in 2014, it was when she debuted on TikTok last year that the little girl became an online sensation.

‘She has always had this confidence about her which my husband says she gets from me,’ said Kyla.

At just 15 months old, she had a bone marrow transplant, which was also when her third genetic condition diagnosed, a form of dwarfism called cartilage hair hypoplasia (pictured with her granddad Earl Wagner and little brother Waylon on his shoulders)

At just 15 months old, she had a bone marrow transplant, which was also when her third genetic condition diagnosed, a form of dwarfism called cartilage hair hypoplasia (pictured with her granddad Earl Wagner and little brother Waylon on his shoulders)

Mother Kyla, right, first posted about Bella's health challenges and their lives in 2014, where she took to Facebook, but debuted on TikTok last year - which is when Bella became an online sensation (Bella, pictured with her grandmother, Diane, Lyle, and Waylon)

Mother Kyla, right, first posted about Bella’s health challenges and their lives in 2014, where she took to Facebook, but debuted on TikTok last year – which is when Bella became an online sensation (Bella, pictured with her grandmother, Diane, Lyle, and Waylon)

‘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.

‘Because she was my first-born, 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.

‘It was like she was the cheerful meet-and-greeter from the moment she got here.’

And it is a ‘miracle’ that she has made it this far, according to Kyla.

Bella pictured with her grandmother, Lyle's mother Cheryl. For a long time, even food was dangerous for Bella, who had to be tube-fed a liquid diet

Bella pictured with her grandmother, Lyle’s mother Cheryl. For a long time, even food was dangerous for Bella, who had to be tube-fed a liquid diet

Kyla, pictured with little Bella at 11-months-old, after her fourth major bowel surgery. The now-eight-year-old does not let her small stature get in the way of her big ambitions to be a fashion designer when she grows up

Kyla, pictured with little Bella at 11-months-old, after her fourth major bowel surgery. The now-eight-year-old does not let her small stature get in the way of her big ambitions to be a fashion designer when she grows up

Bella, pictured after her first bowel surgery in January 2014, even has famous fans, with the American pop star Halsey sending her a little care package of gifts after seeing her TikTok

Bella, pictured after her first bowel surgery in January 2014, even has famous fans, with the American pop star Halsey sending her a little care package of gifts after seeing her TikTok

For a long time, even food was dangerous for Bella, who had to be tube-fed a liquid diet.

She can now eat some solids, but her diet is still highly restricted and her parents hope that, if she is able to have a bowel transplant, it will change her life.

What is cartilage hair hypoplasia? 

According to MedlinePlus, cartilage-hair hypoplasia is a bone growth disorder, which is characterised by dwarfism (short stature) and other skeletal abnormalities.

The condition causes fine, sparse hair, unusually short limbs and short stature, and a weakened immune system which can lead to reccurring infections.

Patients also typically possess malformations at the ends of long bones of the arms and legs, which then affects bone development. 

Those with the genetic condition have lighter, thinner hair because pigment is missing from the hair follicles. 

Individuals with cartilage-hair hypoplasia also often have unusually light-coloured skin, malformed nails and dental abnormalities. 

Deficencies in the immune system range from mild to ‘severe combined immunodeficiency’ (SCID).

Those with SCID lack all immune protection from bacteria, viruses, fungi, and are prone to repeated infections.

Affected individuals are also at an increased risk of developing cancer, particularly certain skin cancers, cancer of blood-forming cells, and cancer of immune system cells.

Source: MedlinePlus 

 

Her genetic conditions also had implications for Lyle and Kyla had when it came to having more children.

Told there was a one-in-four chance of having a baby with the same medical conditions as Bella, they decided to have IVF, so the embryos could be screened for genetic faults before being implanted.

‘We ended up with five embryos,’ said Kyla. 

‘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 three.

‘Throughout my pregnancy, Bella was my biggest cheerleader. She wanted a little brother and she got one. They really love each other.’

Sadly, two subsequent pregnancies using the remaining embryos ended in miscarriage, but the couple are now happy with the two children they have.

Kyla said: ‘We are so fortunate. We have a little girl and a little boy and some people don’t get that.’

And Bella does not let her small stature get in the way of her big ambitions to be a fashion designer when she grows up.

Kyla said: ‘She spent her first two years of life in hospital and never knew anything different.

‘She was used to groups of 15 adults standing around her bed discussing her and to being the centre of attention.’

Now she even has famous fans, with the American pop star Halsey sending her a little care package of gifts after seeing her TikTok video. 

Kyla said: ‘Bella just exudes joy which is why she is so inspirational and Tik Tok is our happy place.

‘Although we do show the nitty gritty of Bella’s everyday medical challenges on Instagram, too.’

Delighted to be back at school now she is double vaccinated against Covid, if a bowel becomes available for transplanting, she will have to isolate again.

Kyla said: ‘She loves school, especially science and math and PE. 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.

‘I don’t think people understand the 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. 

‘Technically, Bella is not even supposed to be here — and she knows that.

‘But here she is, spreading so much joy and inspiring others. She has shown us what really matters in life.’ 

[ad_2]

Leave a Reply

Your email address will not be published.

Latest from Blog