Patient Voice spoke with Kyla Thomson to learn more about how she balances life as a wife and mother of two young children — including one with three incredibly rare conditions — all while still finding time for herself.
Can you tell us about you and your family?
We’re blessed in many ways. My husband Lyle and I have a solid marriage that has become stronger over time. We develop our own traditions and find joy in keeping them up, from camping every summer to sharing about our days at the supper table. We have your typical struggles, but we have quite the unique outlook on what a struggle really is as we’ve learned to deal with them around our daughter Bella’s complex medical needs.
What’s it like being Bella and Waylon’s mom?
Being their mom is everything I need to feel purpose, love, and strength in my life. Bella builds my strength and ability to love more fiercely, and Waylon has been the most healing form of love my heart has ever witnessed.
When Bella was born, were you already aware of the challenges faced by Canada’s rare disease communities?
Not at all. Having Bella and taking the first two years of her life to learn the extent of all her personal rare diseases forced me into a world that I never knew existed. I had a glimpse of rare conditions working as a special ed teacher prior to having Bella, but having her showed me the challenges that rare diseases actually involve.
What ran through your mind when Bella received her diagnoses?
Her first of three diagnoses — Hirschsprung's disease (HD) — came when she was just three days old. It was the reason she was airlifted to the nearest NICU for emergency surgery to fix the blockage in her bowels. At first, I felt confident she would recover well and return to normal life soon. But this was just the beginning.
Later, we discovered that Bella’s HD was more than HD — it became long-segment HD (LSHD), then LSHD that skipped into her small bowel (which had never been seen before), and then 20-some surgeries later we found out that Bella was in full bowel failure and listed for a bowel transplant.
The severe combined immunodeficiency (SCID) diagnosis came when Bella was 11 months old. That second diagnosis was a shock and it pushed me to seek out a community of parents on Facebook.
The cartilage-hair hypoplasia (CHH), or dwarfism, diagnosis was officially confirmed when Bella was two years old. This was a drawn-out diagnosis that we knew bits and pieces of along the way but was never a priority as the life-threatening SCID and LSHD overshadowed all of her medical care.
How has Bella’s triple-diagnosis shaped your lives?
It has shaped our lives enormously. I often say I don’t want to go back to being the type of person I was before Bella. I can’t imagine not knowing what really matters in life: love and understanding what others go through. Rare disease in our daughter’s life may have set countless limitations, but we’ve found ways to see the joy and good outside those limitations.
Did it impact your and Lyle’s decision to have a second child?
It most definitely impacted our decision. Both of us always wanted a large family, but we didn’t want to risk another newborn being diagnosed with SCID and having to endure a bone marrow transplant like Bella had. Genetic testing showed that there was a one in four chance of our next child having SCID, so we decided to do pre-genetic testing and IVF. This was successful and we had our son Waylon when Bella was five.
What does your day-to-day look like?
A typical day with no medical appointments looks like this:
The kiddos wake up and have breakfast together. Before that, I unhook Bella from her overnight ostomy drainage and total parenteral nutrition (TPN) IVs. Lyle gets ready for work while I give Bella her meds, oral vitamins, and first injection of the day, which is a blood-thinner injection. Lyle heads to work and I take Bella to school, then Waylon to daycare.
I run errands, like getting groceries or going to the post office. Once I’m home, I work on our Bella Brave website, merch store, and all the partnerships I’m building which support my new job as an influencer gaining income from paid partnerships and brand deals. I pick the kids up when Bella is finished school. We get homework done and prep supper for when dad's home.
Our evenings are busy with prepping Bella’s evening IVs, injection (GLP2), and meds. Lyle and Waylon usually wrestle, play hockey, or read. Once Waylon is in bed, Bella likes to sit with us and have some hot cocoa, read her books, and chat about the day. If we can fit a TikTok or fun video in there, we do. Apart from that typical day, the days can be completely bombarded with medical phone calls from Bella’s many medical teams planning for upcoming appointments as well as her weekly appointments, which usually happen two to three times a week.
You and Bella are incredibly open on social media. How has your online community enriched your lives?
Ever since Bella was a baby, we’ve spent so much time in the hospital, and social media was our only lifeline to the outside world for years. Our online community gives us so much support and love, which gets us both through the harder days.
Who makes up your strongest support system, offline?
Lyle and I both have larger families and thoughtful friends who haven’t skipped a beat since Bella was born. Our community and co-workers, Ronald McDonald Houses, and the medical families we’ve met along the way have also supported us from day one.
How do you manage to find time for yourself and your marriage amidst your busy life?
It’s very difficult when you’re exhausted from your child’s medical care to try and have any energy for yourself or your spouse, but you need to dig deep. Lyle and I have thankfully found a way to lean on each other without spewing regret or anger out of pure exhaustion. We remind ourselves that the hard situation we’re in isn’t going to last forever. We’ll get through it better, together.
What do you wish more Canadians knew about rare diseases?
I wish they knew the sacrifices these parents and children make every day. This would give them more understanding and compassion for the difficulties their medically-complex friend is dealing with.
What’s next for Bella?
Bella is currently listed for a bowel transplant through SickKids in Toronto, so we’re waiting for the call. When it comes, we have 12 hours to pack a bag and get on the plane that will take us from Saskatchewan to Ontario. The call could come next week or it could take years — we don’t know. So while we wait, we’re going to keep sharing joy and energy, all while hoping to inspire others to get through hard things, too. Whether this continues with our TikToks, social media posts, or maybe even one day our own TV show, we’ll continue to find joy and to follow Bella’s lead on the exciting road ahead.
You can keep up with the Thomson family’s journey on Instagram and TikTok. If you are interested in purchasing Bella Brave merchandise, please visit bellabrave.com. All proceeds go directly towards Bella’s health care and education funds.