Chloe is a happy, healthy young woman living with CF. This hasn’t always been her story though.
Chloe was diagnosed with CF as a baby and lived her childhood as a relatively ‘healthy’ child with CF. Her lung function was always high, sitting at around 100%.
“I remember the diagnosis of CF and coming to terms with this completely unknown condition being a real struggle for Chloe’s mum but despite her own struggle she always instilled normalcy in Chloe. The same expectations that she could do whatever she wanted to do and be whatever she wanted to be,” said Sharon, CF CNC at Westmead Children’s.
“The resilience of people with CF and their families is always something that has made my job so rewarding. I learn from this resilience every day. People like Chloe and her family teach me as much as I teach them,” says Sharon.
After transitioning from the cocoon of care at Westmead Children’s to Royal Prince Alfred in 2021, right in the middle of COVID, she felt the distance. All appointments had to be done online and the safe, supportive nature of the Children’s was gone.
It was not long after this that Chloe contracted COVID. For many of us COVID was scary, however the level of anxiety and fear for the community of people living with CF was high.
Then Chloe’s health started to decline and for the first time in her CF journey she was very unwell. Her lung function fell to 30%. Day to day life was a struggle.
Chloe at RPA September 2021
Feeling defeated, Chloe tried to hang in there and wait for Trikafta to be on the PBS.
Her Mum and Dad were devastated, they could see how unwell Chloe was and were unable to pay for the high costs of Trikafta.
From being a healthy child with very good lung function to a young adult at 30% lung function, it was certainly showing Chloe and her family how unpredictable living with CF can be.
Then there was hope. Chloe’s grandparents stepped in and offered to pay for one pack, 28-days of Trikafta. This cost them $21,500. They offered to continue paying until it was on the PBS.
This is just not possible for most families. When Chloe went to order the second box, Trikafta came onto the PBS.
Chloe remembers the day it became available. She woke up and it was all over socials and news. They were ecstatic!
The financial burden on families is high. The ongoing costs of medications, nebulisers and physiotherapy add up quickly. That’s where CFCC steps in to support families like Chloe’s with medication and nebuliser reimbursements. The team at CFCC are also there to support families emotionally, families that carry the burden of living with a chronic, life limiting condition.
This year Chloe is walking in the 65K for 65 Roses Walkathon in April.
“I look forward to seeing all my ex babies, now adults at events like the 65km walk, it is such a nice place and way to catch up and find out how adult life is treating them and hear about all the wonderful adventures and achievements they are having,” said Sharon.
Chloe‘s Mum, Dad, sister, partner, grandparents, friends and other family, in a team of around 20 will all be walking for Chloe in Team #CureforChloe in 2023.
Not everyone is the age where they can take Trikafta, and not everyone is suitable for Trikafta.
Chloe said ‘the biggest thing for me is that Trikafta is not available for young children 6 to 11-years old.’
Chloe wants to see that young children can get access to Trikafta as soon as possible.
So what does Chloe want you to know?
CF is just so unpredictable. It is so critical that people have access to support services and the latest drugs. The work CFCC does in support, awareness and advocacy for drugs like Trikafta to be available for 6-11 years olds, is why I am walking.
Chloe at Fraser Island January 2023, 10-months after starting Trikafta
By walking 65km for 65 Roses this April, and raising important funds, you are helping people like Chloe and her family to manage the unpredictable nature of Cystic Fibrosis.
Funds are split equally between the Sydney Children’s Hospital Foundation in support of the Westmead Children’s Hospital Cystic Fibrosis Clinic and Cystic Fibrosis Community Care.
The Children's Hospital at Westmead provides comprehensive inpatient and outpatient services to children and adolescents with Cystic Fibrosis in NSW.
Cystic Fibrosis Community Care helps families like Chloe’s to meet the medical costs associated with Cystic Fibrosis, including equipment such as nebulisers, provides support services, respite for carers and patient and systemic advocacy for people living with Cystic Fibrosis.
Currently, we are calling on our community to contact their local MP to help get Trikafta on to the PBS for 6 – 11 year olds so children like Chloe can gain access to this life changing medication.
Thank you for being part of this transformational change for families affected by Cystic Fibrosis.
Please, share your fundraising page, tell the story of why you are joining the 65km for 65 Roses Walkathon in April and help support families like Chloe’s.
REGISTER FOR 65K 4 65 ROSES