Mother-daughter duo, Kyla and Bella Thomson, have been touching the lives of millions around the world ever since Kyla began documenting her daughter’s medical journey online. Mediaplanet sat with the dynamic duo to learn more about Bella’s Story and how their family is helping to inspire others.
Bella’s story has touched the lives of millions around the world. Can you give us an overview of her story for any new audiences?
My daughter Bella was born on Dec. 6, 2013, with three very rare diagnoses we did not know of before birth. At three days old and six pounds of precious, she was airlifted to the nearest NICU in our province of Saskatchewan and had her first surgery on her bowels for Hirschsprung’s disease, which had affected her colon.
We spent the following two years in hospital, unable to go home as it took the entire two years to uncover her other two rare diagnoses and manage her condition that continued to worsen.
Bella was also born with no immune system; a rare disease called: severe combined immunodeficiency (SCID). As a result, she was listed for a bone marrow transplant (BMT), with the marrow coming from an unrelated donor, as my husband and I were not a match. She had her BMT at 15 months old.
Bella’s third condition is a form of dwarfism called cartilage hair hypoplasia. The condition has affected her growth and bone structure but definitely not her spirit. She has taught me that you can still find joy, keep your strength, and remain brave even in the hardest of situations.
Bella’s bowel disease continued to cause dysmotility and chronic pseudo obstruction with her bowels. She had multiple surgeries for permanent IV placement. In 2020, Bella had lost all vascular access but one, and with bowel failure, she needed to be listed for a bowel transplant. She has been waiting for two years now.
By helping people understand Bella’s experiences, what are you hoping to convey to the public?
I hope that by seeing and understanding our story, the public will know that others out there have made it through the most horrible pain and the darkest of days. And not only have we made it through, but we also continue to stand up, ready for whatever comes next. My daughter has taught me all of that. Bella has shown me that even though waves of struggle continue, it doesn’t mean you can’t help yourself get stronger so that the next wave is easier to handle, or sometimes you find yourself surfing it with a big smile on your face. I hope our story inspires others to find joy through the hard days, months, and years and not give up on hope throughout it all.
How has your family coped with the more challenging days of Bella’s journey?
Kyla: My family is very fortunate to have much support from our relatives and friends during the more challenging days. Our community has also been an enormous support, and they have been the ones helping us find other avenues of support when we have to travel away from home. We are incredibly proud to be from Saskatchewan, and the love and support here have meant so much to us since Bella’s medical needs have forced us to travel out of the province for her care. We have a huge family of support to which we can always come back home. Also, regarding Bella’s medical teams, she has primary medical teams in Saskatchewan, Alberta, and Ontario who all provide impeccable care for Bella and myself, my husband, and my son.
What’s been the most moving part about sharing your family’s story online?
The most moving part of sharing our story online has been the personal stories I receive from people who have shared with me how Bella’s story, our story, has helped them, inspired them, and kept them going. In that, I find healing as well. After the first year in the hospital, I started sharing online to connect with my family and friends. This “diary type,” raw sharing that I put out online, grew into therapeutic journaling for myself as I saw how it impacted others who were also struggling in the hospital or a parent of a chronically ill child. Knowing I can help others through this and teach others through this means so much to me, and it does so much for Bella as well. The more people understand, the more support she can receive.
Bella, what’s the coolest thing you’ve done this year?
The coolest thing I’ve done this year is the water slides and water park at the Great Wolf Lodge in Niagara Falls! Mom said they invited us, so we travelled there and spent four whole days in this amazing water park hotel meant for kids like me. Well, it’s totally meant for kids and families. We got story time and dance parties at night, so I got to stay up late and party every night and then water slide all day. We also went to mini golf and played games in a giant arcade. Our room was like an actual cabin, and the bunk beds were made of real logs from trees. We basically had our own cabin in our hotel room with a door and windows and everything. It was so cool!