Limerick teacher's marathon mission inspired by niece shines light on Cystic Fibrosis
THE rhythmic sound of running shoes hitting the pavement has taken on a profound meaning for Amy Keller, a devoted aunt from Dooradoyle, Limerick.
Her mission, fuelled by love and determination, is to create a brighter future for her niece, Hazel, and all those affected by cystic fibrosis (CF).
In November 2021, Amy embarked on her campaign, 65 Parkruns for 65 Roses, that would combine her passion for running with her commitment to making a difference.
The catalyst for this endeavour was Hazel, a 20-month-old bundle of joy who, shortly after birth, was diagnosed with cystic fibrosis, a genetic disorder that affects the lungs and digestive system.
Hazel's diagnosis came as an unexpected blow to her parents, Joanne and Dylan, who were caught off guard by the news.
Like many families grappling with the impact of cystic fibrosis, they were confronted with a new reality, one that demanded resilience, strength, and a relentless pursuit of solutions.
Remembering the day vividly, preschool teacher Amy recounts: “Hazel had been admitted to Crumlin Children’s Hospital with a really nasty rash when she was only a few weeks old. She had been discharged, and Joanne and Dylan were bringing Hazel home when they got the call that the heel prick test detected CF. It was an awful shock for everyone.”
Determined to channel her love and concern into meaningful action, Auntie Amy as she is known, embarked on an ambitious mission - running 65 different parkruns to raise awareness for CF and support Cystic Fibrosis Ireland (CFI).
As for the campaign name, 65 Parkruns for 65 Roses, it holds a deep significance as Cystic Fibrosis is often said as “65 Roses” by children who find the condition difficult to pronounce.
“I knew a bit about CF from working in the preschool. But I took to Dr Google and the first website that came up was the Cystic Fibrosis Ireland (CFI) website,” Amy said.
“You know yourself, at the beginning, you are trying to learn and get as much info as possible and learn as much as you can about something, but you need reliable information,” shared Amy, highlighting the role of accurate knowledge in fostering understanding for the condition.
Now two-years-old, Hazel's journey was an inspiration as Amy navigated through the challenges of her campaign. Having embraced a strict regimen of physiotherapy from a tender age, Hazel and her family are poised to overcome their obstacles, and that begins with medicine.
At eight-weeks-old, Hazel achieved a remarkable milestone, becoming the youngest female with CF in Ireland to access the medicine Kalydeco.
Now, as she grows, her treatment burden has reduced and when she turns six, she will be eligible for Kaftrio.
With each parkrun completed, Amy not only increased awareness but also discovered the power of strong community support.
Her encounters with fellow runners, interactions with parkrun directors, and the collective spirit of those who rallied behind her cause became a poignant reminder that no one walks alone in the fight against CF.
Amy's passion extended beyond the pavement as she recognised the crucial role played by CFI. From grants to advocacy, funding consultant positions to supporting hospital projects, CFI's comprehensive approach resonated deeply with Amy.
“We all love Hazel and care for her, and we can all support Joanne and Dylan as much as they need. But they live with the constant fear and worry of Hazel getting sick, and I can’t take away that fear,” Amy regrettably shared.
“So, I wanted to help but I also wanted to do something different. I enjoy running, and I love the odd road trip, so I decided on the parkruns. By doing this, I feel like I’m doing a bit more to help CFI support families, and Hazel will benefit from that and all the work they do in the future,” Amy explained.
Spanning the length and breadth of Ireland and even crossing international borders to complete a parkrun in Sweden, Amy's approach to fundraising was innovative, subtly integrating her mission into each run without directly soliciting donations.
“I don’t shake buckets, but at the beginning of each run, I introduce myself and let the run director know what I am doing and who I am doing it for”.
Counting every step since the Limerick parkrun in November, Amy finished her final leg at St. Anne’s Park on August 12, and believes the magnitude of her efforts for the future of CF has not fully sunk in yet.
“Who knows what the CF story will be a few years from now, [but] Hazel will have as bright a future as anyone”, Amy smiled, “we’ll make sure of it!”