‘Im sorry to be the one to tell you, its cystic fibrosis…there is no known cure.”

 The rest of the information received on that fateful day was a blur to Kim,

Mum of 12-day old Archer.

Please donate today so we can help families living with cystic fibrosis live a life unaffected by this lifelong genetic condition.

Staring into the eyes of their precious newborn, the terrified mum of 12-day-old Archer just knew that what she was being told couldn’t be right. His beautiful face was so perfect. He had been a dream baby in his short time on earth. There had to have been a mistake.

But Kim could hear the sadness in the doctor’s voice as she received the devastating news that would change the new family of four’s lives forever.

Within 24 hours of learning their beautiful boy had been diagnosed with cystic fibrosis a life-limiting condition that affects the lungs and has no cure, Kim and her husband, Nick, were sitting in the specialist’s office with their world crashing down even further around them as they learnt that most children with cystic fibrosis will not live past their twenties.

From that point on, Kim and Nick’s active life would revolve around medication and intense exercise regimes to clear the mucus from baby Archer’s airways so he could breathe clearly and reduce the chance of serious lung infection including pneumonia.

While my heart breaks for Archer’s family and 1000’s of Australians just like him diagnosed with cystic fibrosis, with thanks to donor support, I am proud to say that we can make this terrible time a little easier for families too. As Kim recalls,

“Fortunately, the hospital put us in touch with our local cystic fibrosis organisation. The cystic fibrosis team was there for us. They explained the condition in real terms and turned the fear, anger and despair into what has since become a journey of joy, love and most of all…hope. They gave us strength so we could be strong for our children.”

Please donate today and help us provide vital equipment, medication and support so parents like Kim and Nick can keep their babies airways clear from the day of diagnosis.

As a chronic illness diagnosed in early childhood, cystic fibrosis doesn’t just affect the person with the condition. The whole family is impacted and physical, emotional and financial care are all critical support services to the journey of every family.

Archer is now 17 months old and has been reasonably well so far. However as Kim says,

 “We know it’s only a matter of time before the hospital admissions start so we’re preparing for a bigger impact in the future. Since his diagnosis, our cystic fibrosis team gave us access to safe, reliable information that meant we were well prepared for our journey from day one. It is this that has helped us keep him well so far.

 Archer has cystic fibrosis, but cystic fibrosis doesn’t have Archer.” 

 And this is only because of support from people like you.

Please donate this financial year so we can continue to provide practical and emotional support to all families living with this chronic condition which has no known cure.

 

 

While the families of newborns have to make lifestyle changes to keep their babies alive, the anxieties of living with cystic fibrosis continue to evolve. The pressures of hospital visits, avoiding everyday germs when starting school and fitting in hours of physiotherapy and rigorous medication regimes around work, play and education provide relentless challenges that never go away.

Six-year-old Ben started school last year. His life revolves around daily therapy, medication and avoiding the ‘germs’ that can threaten his life and lead to extended stays in hospital.

 “Mum tells me I am tough, and she is proud of me. But sometimes I find it so hard to stay well, but I guess we can all do hard things”, Ben, aged six.

When Virginie and Angus received Ben’s diag n osis at six weeks and five days old, they had the same crushing thoughts and feelings of shock, helplessness, despair and grief for the life Ben would never live.

“Life changed in an instant. We’re constantly on the lookout for potential hazards that may harm Ben including bacterial contaminants found in dirty water and mulch and people with a cough or cold” said Dad, Angus.

But despite six tune-ups and extended hospital stays in his short life, animal-lover Ben is an absolute bright light to be around.

With a smile that lights up any room, Virginie and Angus work hard to keep him in a positive mindset. Writing in his gratitude journal every night, the happy-go-lucky six-year-old often writes that the thing he likes most about himself is his cystic fibrosis.

With thanks to strict medication protocols and a relentless exercise regime of up to four hours every day, Ben slots into life at school just like any other boy his age.  When asked what he likes to do in his spare time, Ben answers quickly like any other six-year-old, “unleash my imagination so I can build things with Lego”.

What started as a hopeless journey, six years on, Virginie and Angus make sure that their family makes the most of every day.

They have access to the most up-to-date information and know that their cystic fibrosis team is fighting behind the scenes for access to treatment protocols and medication that can improve the quality of life today and extend life expectancy even further into the future.

As Mum Virginie says “there is no day off from cystic fibrosis…but with thanks to your support, we don’t let it stop us living”.  

Your kind gift can help families living with cystic fibrosis make the most of every day, despite the constant challenges faced by the whole family. Please donate today.

Meeting the families living with cystic fibrosis always fills me with hope for the future. With thanks to the generosity of donors, the outlook for these families is constantly improving. Medical research has given us exciting new drugs in recent years that have helped increase strength in children. Kids like Ben now go to school, play with their friends and go on exciting adventures with their families.

And Dad’s like Angus express their gratitude,   

“We thank the last generation of mums and dads who allowed their kids to take part in clinical trials. We are humbled and extremely grateful. For this reason, Ben is also involved with clinical trials to pay forward to the kids of tomorrow who like Ben will unknowingly be born into this world with cystic fibrosis.”

Despite treatments developing quickly and medication enjoying advancement in recent times, cystic fibrosis is still a lifelong condition with no known cure.  We still have a long way to go before children like Ben and Archer can live a life unaffected by this genetic condition.

Every family must face new challenges as they reach milestones such as starting school and making friends. Where other families might imagine a career or a wedding day for their children, parents of those living with cystic fibrosis must build their hopes and dreams around daily therapy and potential hospital admissions.

these are the non-negotiable parts of living with cystic fibrosis that will stay with them forever.  With donor-funded advocacy and access to medication, we can turn the devastation of diagnosis into a beacon of hope for the 3,500 plus people in Australia today living with cystic fibrosis.

By providing access to vital medications, equipment and supporting and advocating for the families of those living with this chronic condition, we help children like Ben and Archer live in a world less affected by cystic fibrosis than when they were diagnosed.

Please donate this financial year so we can continue to strive to give each person living with cystic fibrosis the support they need to live their best life despite cystic fibrosis?

 

Petrina Fraccaro

Chief Executive Office and Managing Director

Cystic Fibrosis Queensland and Trusted Care

 

PS, Please donate this financial year to help children like Ben and Archer defy the odds and live a long and healthy life. All donations over $2 are fully tax-deductible