From a young age, nine-year-old Aurora has always been a great role model to her little brother, Zachary. They’ve achieved so many milestones together– from riding a bike to learning the phonic sounds of the alphabet.
Like any other kids in the school playground, they’re your typical brother and sister duo. But, it’s the rigorous treatments before and after school that sets them apart and has helped shape their unbreakable bond.
Aurora and Zach both have Cystic Fibrosis (CF), the most common, life-limiting condition in Australia. The respiratory illness causes an abnormal build-up of sticky mucus in their lungs, airways and digestive system that can make it difficult to breathe.
For some families, managing a lifelong condition like CF can be difficult and at times frustrating. Instead of playdates there are appointments, and instead of sleepovers there are stays. But every child’s journey and experience is unique. Every day, Aurora and Zach can take multiple doses of antibiotics, complete two physiotherapy sessions and can inhale their nebulisers up to five separate occasions to help clear and treat their airways.
For six-year-old Zach who has autism and ADHD, treatment at times can be challenging and overwhelming.
“Aurora will always patiently wait for Zach to finish his treatment. She’s very compliant and often shares words of encouragement or shows him what to do,” said Mum, Holly.
Despite CF having no known cure, the siblings don’t let their condition stop them from having fun and simply being kids.
“Aurora and Zach are two of the most resilient and kind children. I’m just so proud of them,” added, Holly.
Their positive attitude can be largely attributed to their dedicated, multi-disciplinary medical team from The Children’s Hospital at Westmead’s Cystic Fibrosis Clinic, who go above and beyond to help them live their healthiest lives.
“Zach and Aurora adore all of the staff at the CF clinic. From the specialists, to the therapists and to the nurses, we’re just so grateful to have access to an extraordinary team of staff in one central location,” Holly said.
“For Zach in particular, visiting the same people in a welcoming environment helps make the uncomfortable tests easier.”
Since receiving the life-altering diagnosis in 2016 that not just one, but both children have CF, the family have found comfort knowing they have the CF clinical team in their corner. They have been there every step of the way to help support the family through the ups and downs of their journey – including the unknowns of COVID-19.
“We do our best, but it is hard being a single parent finding time to work. I think the last two years have been our hardest. During COVID, I’ve felt the weight of every decision on my shoulders. Do I let Aurora go to her friend’s birthday party? Will that playground be safe…?” recalls Holly.
In September 2021, both Zachary and Aurora were admitted to hospital for two weeks due to a chest infection. The drop in physical activity during lockdowns meant their little bodies found it even harder to fight off infections.
“Knowing you have people like Dr Dominic Fitzgerald and Sharon Hunt in your corner during the lowest of lows is comforting. That’s why I’ve signed up to the 65k 4 65 Roses virtual event this year, to help give back to the clinic who’s been there for us, from day one.”
This February, Holly’s family will join thousands of people across the state to complete 65k 4 65 Roses virtually. The event aims to raise $250,000 for Sydney Children’s Hospitals Foundation in support of the CF Clinic at The Children's Hospital at Westmead and Cystic Fibrosis Community Care.
While no child should ever have to learn to live with CF, those who do deserve our all. Your support of 65k 4 65 Roses would help the CF clinic provide the best possible care to over 215 patients like Aurora and Zach.
Visit 65kroses.com to register today or learn more.