3 days ago
NRL cheerleader Savannah had a 'normal' life... Until she made a devastating discovery in Dolly magazine
From the outside, Savannah McKell seemed to have a picture-perfect life.
But behind closed doors, the former Newcastle Knights cheerleader was secretly battling a life-shortening condition.
'People often looked at my life and saw a fairytale - I was cheerleading, modelling and taking glamorous Instagram pictures... What they didn't see was me coughing up blood between cheering, managing life-threatening lung infections, and silently battling cystic fibrosis,' Savannah told FEMAIL.
When she was born, her parents were given the devastating news that she might not live past her teens - and if she did, she would likely only reach her early 20s.
Her parents kept her life relatively normal, shifting the focus away from her illness so she could simply enjoy being a kid.
From the age of 20, she began experiencing more frequent infections and health complications. But it wasn't until she was 24 that her condition took a terrifying turn - after she suffered an episode of hemoptysis, just hours before her engagement party.
'The day I started coughing up cups full of blood was the scariest day of my life,' Savannah recalled.
'As I was rushed to the emergency room, all I could think was I'm not going to get to say goodbye or 'I love you' to my parents or make it to my wedding and marry my husband... The party was at the back of my mind and I just went into survival mode.'
Savannah has been living with the incurable disease since she was six weeks old.
Growing up, she remembers having a 'beautiful' childhood, even as she navigated life with cystic fibrosis (CF) - a genetic disorder that causes an abnormal build-up of thick mucus in the lungs, airways and digestive system.
'My family kept my diagnosis very positive and almost pretended it didn't exist to me as I was so young and unable to comprehend,' she said.
'I had an amazing family, and we'd spend as many days as we could by the beach to soak up the salt, which helped my CF. I had a lot of extra hospital visits and treatment I had to do but my mum always tried to make them as enjoyable as possible.'
Dolly discovery
Savannah was never fazed by her diagnosis - until she came across a confronting detail in the teen magazine Dolly that revealed the soul-crushing reality of her life expectancy.
'It was devastating. I knew I was "more prone to getting a cold, cough and flu" but I didn't know my CF came with a very dire life expectancy,' she recalled.
'Finding out at 12 years old - from reading Dolly magazine - that I was nearly "halfway" through my life had a profound effect on me.'
After reading the article, she made the decision to keep her condition a secret.
'I chose to keep my CF private in the early 2000s. With the life expectancy being what it was, I didn't want the stigma of being "the sick girl" or that "she was going to die soon",' she said.
'I wasn't ashamed of having CF but I never wanted it to be the talking point to my friends, peers, classmates and just everyone around me.
'Growing up is hard enough without already being labelled as 'different'. I just wanted to be Savannah, not Savannah who has CF.'
Her childhood with CF was so normal that she didn't really worry about her diagnosis until she read something about the life expectancy of someone living with CF in Dolly magazine
As a child, Savannah knew she was 'different' because of the number of hospital visits she had compared to her school friends and other kids her age.
'Some of them said they'd never been to hospital before, yet I was going once a month for clinics and yearly needles, and needing antibiotics all the time for a "cold",' she recalled.
'The clinic visits when I was young were very traumatic with tubes being shoved down my throat and multiple blood tests, and antibiotics... no five-year-old should have to endure stuff like that so young.'
Defying odds
As she got older, the life expectancy for people with cystic fibrosis gradually increased to around 30 years.
However, Savannah, now 29, has received promising news after defying all odds - thanks to medical advancements, research and a breakthrough prescription drug called Trikafta.
'Life expectancy has increased drastically and continues to increase every day. While it's in no way a cure, it's a big step for cystic fibrosis sufferers. It's now almost double the life expectancy to 60,' she said.
What many people didn't see was that Savannah was struggling behind closed doors -coughing up blood between cheerleading and managing life-threatening lung infections
How you can help make a difference
May is the month of Cystic Fibrosis Awareness.
Savannah is sharing her story in support of CF Together.
She is hoping to help raise awareness and funds for Cystic Fibrosis research.
You can donate here.
'Trikafta has completely changed my life. I can now go months, if not years between antibiotics, IVs, hospital stays and clinic visits. Something that used to occur monthly.
'I'm not constantly clearing my throat or coughing up thick mucus, I can now take deep breaths and have clear lungs. It also allowed me to fall pregnant naturally which never happened before Trikafta.'
Before discovering the life-extending drug, Savannah experienced fertility issues while trying to get pregnant - likely due to her condition.
Baby joy
She and her husband conceived their first son Elijah via IVF.
'Carrying a pregnancy was the hardest challenge physically, as the strain on my body and health was incredibly hard,' the young mum said.
'The only thing that got me through was the beautiful baby boy I was fighting so hard for.'
Three months postpartum, Savannah contracted an infection called B. cepacia, often referred to as a 'death sentence' for people with cystic fibrosis.
This scare prompted her to start Trikafta after a year of hesitation.
Savannah kept her CF a secret from most people for many years due to stigma and a desire to be seen as 'normal' but she has become more open about her condition - especially after having her son
'The thinning of mucus from Trikafta not only cleared my lungs but cervical mucus too, allowing to conceive naturally, something we had tried for many years with no success without IVF,' she said.
Thanks to advocacy by CF Together, she now has access to the life-saving medication - something she attributes to giving her the best years of her adult life.
Highs and lows
Savannah said her condition is now 'very stable'.
'I live 99 per cent of the time a somewhat normal life minus the pills every day and extra precautionary clinic visits. My new life expectancy is promising and I can look to the future without as much fear,' she said.
Despite thriving at 29 with a second baby on the way after conceiving naturally, she still struggles with the 'constant mental noise and fear of decline'.
'While we have advancements and fancy new drugs, it still only takes catching one bad bug to completely bring your whole body and life down, as well as the mental side,' she explained.
'CF means taking pills every day, with every meal, since the day I was born - and that hasn't stopped.'
What is cystic fibrosis carrier testing?
Cystic fibrosis carrier testing is a genetic test that will help to identify if you have changes to the CF gene.
The test involves providing a blood or saliva sample and requires a referral from your GP, obstetrician, geneticist, or gynaecologist. There are around 2,000 gene changes that cause CF, and a typical CF screening will identify the most common CF gene changes in Australia. However, there is still a small risk that you may be a carrier of a rare CF gene change.
If you have a family history of CF, it is important to tell your GP, obstetrician or gynaecologist before providing your sample for screening. This will ensure that you are being tested for the most common CF gene changes as well as the specific gene change relevant to your family.
Making the decision to know your CF carrier status through genetic testing is a choice only you can make. Knowing whether you are a carrier can help inform you of your reproductive options.
You can discuss your CF carrier screening options with your GP, obstetrician or a genetic counsellor.
On November 1, 2023, reproductive carrier testing for cystic fibrosis, fragile X syndrome and spinal muscular atrophy was made available for every eligible Australian, thanks to two new Medicare item numbers, allowing people to make more informed choices regarding family planning.
The test can be ordered before pregnancy or early in pregnancy.
Savannah said she's now enjoying living a 'slow, nature-filled life'.
'I'm raising my family without any fear for the future. Something as small as going for a swim at the beach is such a blessing for me and I want to spend the rest of my life just appreciating every second,' she said.
For couples looking to start a family, Savannah urges them to get a genetic blood test before trying to conceive.
'CF is genetic but I advise couples looking to start a family to please do a genetic blood test before falling pregnant. My parents had no idea they were carriers and it's surprisingly more common in Australia than you think to be a carrier,' she said.
By sharing her story, Savannah wants every young person living with cystic fibrosis to know that their diagnosis does not define them.
'It should never stop you from chasing the life you dream of. Never listen to any one that doubt you or wrap you in cotton wool because of your disease,' Savannah said.
'I chose to keep my illness private growing up, but I've learned that strength doesn't come from pretending everything's ok... it's from being honest and proving people you can do all of this while fighting something so horrific.
'I share my story now because I wish, as a little girl, I had seen someone like me thriving despite their diagnosis. Appearances don't always reflect reality.
'You truly never know what someone is going through behind the scenes. You should always prioritise your health for those who weren't as blessed.'
According to CF Together, nine out of 10 children diagnosed with cystic fibrosis are born into families without any prior history of the condition.
In cases where there is no family history, both parents of the child who is born with CF must be carriers of the gene change that causes CF.
One in 25 people are estimated to carry the gene changes that can cause CF, and most people are completely unaware they are a carrier.
CF carrier screening testing is available to help you and your partner find out whether you are among the one million Australians who carry the CF gene change.
