Cure4CF Update

Penny’s Story: A Mother’s Perspective on Life with CF

Penny is a truly remarkable little girl. With her quick wit, sharp sense of humour and intelligence that keeps everyone on their toes, she has a way of filling a room with laughter. She loves netball, drawing and creating, and confidently tells anyone who will listen that she’s destined to be an A‑grade netballer. She also has very refined taste for her age, with sushi sitting firmly at the top of her favourites, especially when visiting Adelaide.

At her core, Penny is a sweet soul with endless flair. She is wise beyond her years, something her parents believe has been shaped by living with cystic fibrosis (CF). From a young age, she has spoken with her specialists and nurses with maturity and understanding well beyond her age. She is a brilliant little girl who continues to amaze her family every single day.

Learning About CF

When Penny’s parents first learned she had cystic fibrosis, the emotions were overwhelming. Confusion, fear and devastation came all at once. Penny was diagnosed while her mum was still pregnant, which is not common. While having that knowledge before birth allowed time to learn and prepare, nothing could truly prepare them for a life they never expected.

Like many parents, there was deep anxiety about how to keep their daughter safe and healthy. It felt like a grieving process, as though the future they had imagined for their child had been taken away. But with time, that perspective changed. Penny showed them strength and resilience beyond measure, and today her parents believe wholeheartedly that her future is bright.

A Typical Day Living with CF

Life with CF is busy, but in many ways it looks like any other family’s routine. School, work, after‑school activities, homework, dinner and bedtime fill the day. In between, Penny’s treatments are carefully worked into the schedule, which means being organised and time‑efficient.

Mornings start with medications and a good breakfast, and inhaled treatments if needed before school. If Penny hasn’t had much physical activity during the day, the family makes time after school for a game of netball at the park. Keeping active is important, and it’s also something they can enjoy together.

In the evenings, medications are taken again at dinner, followed by inhaled treatments. This is the routine when Penny is well. When she is unwell, everything takes more time and can be frustrating for her. During those tougher weeks, the family makes a conscious effort to include moments of fun, knowing that mental wellbeing is just as important as physical health.

What People Should Know About CF

One message Penny’s family wants people to truly understand is how critical it is to stay away when you are sick. For someone with cystic fibrosis, exposure to illness can be life‑threatening. A simple cold or flu can lead to hospitalisation and permanent lung damage.

As parents, they work tirelessly to keep Penny safe, but so much is outside their control. Sending her to school means living with constant worry about the next infection. They believe strongly that all immunocompromised families deserve the courtesy of others staying home when unwell.

The Relentlessness of CF

CF is often described as relentless, and for Penny’s parents, that word means working endlessly and never giving up. It means continually fighting for a better future, because their child deserves nothing less.

Moments of Pride and Joy

Some of the proudest moments come from watching Penny face the challenges of her daily medications. Tablets are not easy, and some days there are many more than others. Seeing her persist, show courage and take them even when it’s hard fills her parents with immense pride.

Penny may be small, but she is mighty. Watching her excel in netball, push herself to improve and remain a team player, even on days when she doesn’t feel her best, brings enormous joy. She wants to be included like everyone else, and her determination inspires everyone around her.

Hope, Resilience and Family

Having a child with CF has reshaped how this family views hope and resilience. Fighting for Penny’s future, and for the future of others living with cystic fibrosis, is something her mum considers a true privilege. Penny has given her strength she never knew she had.

As a family, they are a team. They acknowledge the losses, celebrate the wins and continue to move forward together, no matter how big or small those moments may be.

Why CF Research Matters

Supporting CF research is deeply personal. As a parent, there is a responsibility to do everything possible to fight for a better future. Children and adults living with CF deserve better medicines, better treatments and ultimately a cure.

Organisations like the Cure4CF Foundation play a vital role in making this possible.

Looking to the Future

Research has already transformed what is possible for people with cystic fibrosis. Advances over the past 20 years have changed lives, and ongoing research offers hope that one day all children with CF will grow old and live full, healthy lives.

Treatments like Trikafta have been particularly encouraging. Hearing stories of people in their late 30s living fuller, healthier lives brings optimism. Penny’s family has seen that when she becomes unwell, her recovery does not always take as long, and they are grateful for that progress. Their hope is that future treatments will be available for all gene types, so every person with CF can benefit.

Giving Back Through Fundraising

Penny has always been the inspiration behind fundraising efforts. Since 2017, her family has proudly supported Cure4CF and experienced unwavering support and kindness along the way. With the help of others, they have raised over $40,000 for CF research and remain committed to continuing that work for as long as they are able.

A Message to Supporters

For anyone considering supporting cystic fibrosis research, the message is simple: every effort counts. Whether it’s fundraising, donating or speaking up, you are making a real difference. The CF community needs passionate people committed to change, and there is nothing more rewarding than helping create a better future for others.