BREAKING BARRIERS FOR CF

Community Stories

Thank you for sharing your Stories

A heartfelt thank you goes out to all the courageous individuals who have shared their personal stories for Layne’s challenge.

 

Your willingness to open up and share your experiences is truly inspiring and plays a pivotal role in raising awareness for cystic fibrosis.

 

As those within the CF Community know, CF varies from person to person, and every story is a unique testament to resilience, strength, and the power of community. By sharing these stories, we shine a light on the challenges and triumphs faced by those living with CF, fostering understanding and empathy.

 

Your voices are making a difference, and together, we are creating a world where cystic fibrosis is better understood, and support is readily available. Thank you for your courage and your commitment to making a positive change! 

Day One - Ben

Ben was born on the 1st of September, meaning it is only fitting that Layne would kick off his challenge by sharing Ben’s Story.

Day Two - Jess

Jess was diagnosed at birth, and was relatively well as a child. However, when she was just 18, she was given just 6 months to live.

Day Three - Alfie

Words over the phone from the most gentlest lady rippled through my body that day, “I’m so sorry to have to tell you, Alfie has Cystic Fibrosis.”

Day Four - Rory

Rory has tackled many challenges associated with CF, but this hasn’t stopped him from taking on his own incredible challenges.

Day Five - Steph & Jeremy

Steph was the epitome of Brave and her memory lives on like the many other people who have lost the battle to this debilitating disease.

Day Six - Sam

My lung function is below 20 percent, but I’m still fighting each day to make sure I give myself the best chance at a new pair of lungs. 

Day Seven - Julia

Unlike most people with CF, I wasn’t diagnosed until I was 6, meaning I went the first 6 years of my life without proper medical care.

Day Eight - Caz

Born in 1967, Caz’s mother had a difficult time convincing doctors there was something wrong with her firstborn. 

Day Nine - James

James spent the first two weeks of life in a little incubator, with his bowel outside his body with Doctors trying to unblock it. 

Day Ten - Abigail

With no prior family history of CF, Abigail was born with meconium ileus and underwent emergency bowel surgery at just 2 days old. 

Day Eleven - Nathan

Nathan, an ex-Wallaby, has represented Australia in rugby and is the only known athlete to have played an elite contact sport with CF. 

Day Twelve - Ele

Ele has lived and worked between Australia and Indonesia and is passionate about encouraging others with CF to do the same. 

Day Thirteen - Flea

My sister battled CF for 16 years but sadly lost her battle in 2007. She is my reason for living life every day to the fullest! 

Day Fourteen - Kyle

As a CFA Ambassador, Kyle is dedicated to promoting a healthy mindset and is deeply passionate about overall health and well-being.

Day Fifteen - Jackie

Two years ago I was gifted two beautiful new lungs and I will forever be grateful for this second chance at life, for this extra time on earth. 

Day Sixteen - Adrian

Having a busy day job and two kids, it’s important to fit in the time for fitness to help manage my CF and Cystic Fibrosis Related Diabetes. 

Day 17 - William

Being first-time parents, we were way in over our heads. We really had no idea what it all meant but we sure do now!

Day 18 - Glenys

Glenys was first diagnosed with Cystic Fibrosis at 61yrs. This is extraordinary as the average life expectancy for her generation is 35yrs. 

Day 19 - Chase

7-year-old Chase is an avid and keen football player and has shown that having CF won’t stop his sense of adventure. 

Day 20 - Zahra

Zahra and her brother both live with CF, however are affected by it very differently. Zahra has a lung function of just 52% on her good days.  

Day 21 - Lisa

Lisa was diagnosed at 18 months, however only had her first hospital admission at the age of 45 years.

Day 22 - Levi

Throughout his short life so far, Levi has experienced both ups and downs, but has never giving up.

Day 23 - Kirsten

I was diagnosed at birth and faced many challenges spending a large part of my first year of life in hospital.

Day 24 - Lucas

Lucas was diagnosed with Cystic Fibrosis when he was 4 weeks old after having a heel prick test done at birth.

Day 25 - Ezra

CF doesn’t take a break. It comes on holidays, continues when he is well, and when he is unwell, no days off!

Day 26 - Rory

Rory is very lucky to be born in the generation where modulators are available for his genetic variation. 

Day 27 - Bronte

Bronte is a twin, who at birth looked so healthy but within 24 hours had to be rushed into life-saving surgery

Day 28 - Alex

Alex started solid foods when he was 4 days old as he had to take tablets  so he could digest his milk.

Day 29 - Helen

I hope my story inspires and gives encouragement to new parents receiving the news of Cystic Fibrosis.

Day 30 - Jessie

Jessie is a 20-year-old strong-willed, resilient young man. His twin sister isn’t a carrier of the CF gene.

Day 31 - Blake

CF has given me the chance to live the life I always wanted to. It’s given me a career in an industry I love.

Day 32 - Sophia

From day 1, we were thrown into  an unknown world of physiotherapy, medications & fortnightly trips to Hospital.

Day 33 - Leah

I was diagnosed in 2022, at 54 after years of misdiagnoses by a multitude of specialists. 

Day 34 - Clare

Clare turns 2 soon, and we are grateful for the cheeky, strong-willed toddler she has become. 

Day 35 - Isabel

Both our families have zero relatives with CF so it was a shock to see our tiny baby struggling with the disease. 

Day 36 - Bradley

Brad’s resilience has played a remarkable role in his journey with CF, and using his story to inspire others.

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