DONATIONS AT WORK HIGHLIGHTS 2024/25

Rotary Flames House

A harbour in the storm

When their children Nixon, 12, and Aria, 9 were both diagnosed with the same neurodegenerative disease, Jessica and Kyle were understandably devastated. Thankfully because of support like yours, Rotary Flames House has been a saving grace for their family and a place where their children can live their fullest lives possible surrounded by joy and love.

Nixon was a typically healthy boy, enjoying karate and bouncing on the trampoline. Then when he was about eight years old, he had his first seizure and began regressing in his speech and mobility. He visited the Alberta Children’s Hospital often that year as specialists searched for a diagnosis. Genetic testing revealed the shocking news that he has a life-limiting Mitochondrial disease. Since then, it has progressed leaving Nixon nonverbal, wheelchair bound and fed through a feeding tube. Heartbreakingly, not long after, Aria was diagnosed with the same condition at age six. She currently relies on medication to control her seizures and because she is experiencing speech delays, uses technology and sign language to help her communicate.

While they do so with unconditional love, caring for Nixon and Aria’s complex medical needs is exhausting. That’s why the couple is so grateful for Rotary Flames House and the compassionate respite care that donors like you support.

Jessica and Kyle can bring Nixon and Aria to the House and take a much-needed break from managing their round-the-clock care. They can visit the mountains or enjoy a date night with peace of mind that their kids’ specialized care continues uninterrupted.

“Rotary Flames House has been our harbour in the storm. The teams there provide a safe, secure place for Nixon and Aria while we take time to recharge to be the best parents we can be. Having that support and people who can nurture us and navigate with us is just indescribable.”
— Jessica, Nixon and Aria’s mom

The kids relish in the change of pace, as well. Nixon and Aria enjoy music therapy and other fun activities at the House. Aria, a natural caregiver, likes to pretend she is one of the nurses, while Nixon has always enjoyed playing foosball and video games in the Calgary Flames room. Even as his disease progresses, limiting his ability to play, his eyes light up watching the friendly volunteers play for him.

“Our family mantra is ‘We choose to backflip through tragic, and let our struggles make magic’,” says Jessica. “And we are forever grateful to the Rotary Flames House team who are determined to do the same for children like ours.”

Improving Service Quality

The introduction of new roles at Rotary Flames House, and expansion in scope of current positions, is allowing more children who need palliative care to access it sooner. This year the House welcomed a new Nurse Practitioner and a Clinical Nurse Educator to help support families, giving physicians capacity to meet more children in the community who may require palliative care. These specialists have also begun to expand their consultative services and outreach to family physicians and pediatricians across southern Alberta, including offering real-time pediatric palliative care advice through an on-call service. Provincially, they are also leading a training program for homecare workers, neonatal and pediatric intensive care staff, and hospital inpatient teams, providing coaching on difficult conversations around end-of-life care and complex decision making. Locally, the House’s new Clinical Nurse Educator is implementing an education strategy to build capacity at the Alberta Children’s Hospital to ensure more staff are equipped to provide the highest standard of compassionate, evidence-based palliative care.

And with the welcoming of a new Recreational Therapist, therapeutic programming has been expanded to ensure engaging and fun activities are offered to children during the weekends, too. Additional grief and bereavement counselling is now available, including a new program for bereaved siblings.

Increasing Capacity

Rotary Flames House is now regularly at capacity, thanks to efforts to enhance the Family Support program. Coordinated by the new Nurse Practitioner, Family Support offers urgent and non-urgent respite stays. With additional resources, this team can connect with families on a more regular basis to assess their needs for respite or support in the home.

Through this program, families also have an opportunity to settle in at Rotary Flames House directly following a hospital admission to learn a new care plan in a supportive environment or enjoy rest following an exhausting hospital stay.

Increasing Choice for Families

One of the most significant initiatives the team has undertaken this year is beginning the process of providing end-of-life care at home. In collaboration with Pediatric Homecare, a working group has been established to begin supporting families who wish to remain at home further along in their child’s end-of-life journey. This community outreach program combines hands-on clinical care—such as developing individualized care plans and conducting home visits—with strategic planning to ensure families feel safe, supported, and confident. Families can be directly admitted if needed to Rotary Flames House for symptom management or end-of-life care 24/7. Since launching in Fall 2024, the program has supported three families with compassionate, home-based care. The team has also provided virtual consultative support to homecare nurses and primary care physicians for children at end of life in the communities outside of Calgary.