Nixon was a typically healthy boy, enjoying karate and bounces on the trampoline. Then one day, when he was about eight years old, he began having seizures that were difficult to control, and he started to regress in his speech and mobility. He visited the Alberta Children’s Hospital often that year as specialists searched for a diagnosis and in 2022, genetic testing revealed the devastating news he has a Mitochondrial disease – his cells don’t produce enough energy to function. It is sadly, a neurodegenerative, life-limiting condition. Today, now 11, Nixon is nonverbal, G-tube fed, uses a wheelchair, and relies on oxygen support while he sleeps.
While coming to terms with their son’s devastating diagnosis, Jessica and Kyle had their daughter Aria tested that same year, at age six, and heartbreakingly, results came back she too has the same condition. She relies on medication to control her seizures and because she is experiencing speech delays, uses technology and sign language to help her communicate. Faced with this new unimaginable reality, the family, who lives in Sylvan Lake, had to put their two-storey dream home they built up for sale and move into a more accessible bungalow. Jessica left her job to be a full-time caregiver for her children. While they have had to take on these new roles of honourary dieticians, nurses and respiratory therapists, and do so of course with love, caring for their kids’ medical needs, on top of being Mom and Dad, is exhausting. Nixon requires up to 10 medications a day.
That’s why the family is so grateful for Rotary Flames House, and compassionate respite care provided there, thanks to generous investments from our community. Jessica and Kyle can drop their kids off at the House and take a break from caring for their round-the-clock medical needs. They can have peace of mind that while their specialized care continues uninterrupted, Nixon and Aria can take part in fun activities and therapeutic programming not available to them in their own community that care for their spirits too – like art and music therapy. Jessica and Kyle can stay at the hotel across the street or take a trip to the mountains, while the kids enjoy playtime in the Flames game room and sensory room and even attend school at the House. The nurses spoil them too, and even allow the kids to share a room, with their beds pushed together, so they are always together. As well, Jessica and Kyle have received valuable support from the House’s esteemed social work team, from coping with a life-limiting condition and making difficult decisions about palliative care, to grief counselling.
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Watching both their children live with this terrible disease is devastating, and caring for their medical needs is wearing, but what makes their journey brighter is Rotary Flames House – their “saving grace” and “harbour in the storm.” She is comforted knowing that Nixon and Aria are living their fullest lives possible through the joy and support they find at Rotary Flames House.
