Ocean Grove’s Baxter family were told their daughter Ella wouldn’t live past the age of 16 when she was diagnosed with cystic fibrosis at five weeks old. The now-19-year-old has overcome major challenges to be where she is today.
But the story behind the photo isn’t just any old fan-meets-idol tale. The photo represents one of the reasons Ella is alive today.
The 19-year-old wasn’t expected to live past 16 when she was diagnosed with cystic fibrosis (CF) at five weeks old.
Living with CF is all Ella has ever known, and the young woman with a contagious smile has overcome major physical and mental challenges, and severe bullying in her early teens to be where and who she is today.
CF is a genetic disorder that impacts the whole body, mainly the respiratory, digestive and reproductive systems. For Ella, her lungs, pancreas and liver are heavily impacted.
Thick and sticky mucus makes it difficult to clear from the lungs, clogging tiny air passages and trapping bacteria.
Ella’s life revolves around dance and dance teaching. Photo: Ginger + Mint
“A lot of CF (symptoms are) inward. Something I struggled with the most growing up was people didn’t really get it because I looked normal,” Ella says.
She suffers from a low immune system and severe fatigue as a result of CF, and she’s been in hospital more times than she cares to count.
Trikafta has been a game-changing drug for Ella and others living with CF after it was listed on the Pharmaceutical Benefits Scheme in 2022.
“Scientifically it’s the closest thing to a cure, in that it is the only tablet that physically alters the CFTR gene,” she says, “I’m so lucky to have the right gene to be able to have it, it’s not for everybody.”
Due to the frequency of hospital visits, Ella had a port-a-cath placed on the side of her chest in her early teens, a device used to draw blood and administer treatments. During year 7 a group of fellow students turned on Ella when they found out about the port.
“I was really badly bullied to the point where I did not want to do it anymore. I was so close to ending it all,” she says.
It was during this time, at her lowest, when Ella discovered God and her Christianity, which gave her a sense of purpose and belief.
“That for me was a turning point of ‘I have a purpose and I have something to fight for’.”
The day Ella found her connection with God, was the day she discovered another saviour in singer-songwriter Billie Eilish. Her song ’idontwannabeyouanymore’ resonated with Ella, pulling her through one of her darkest moments.
“I sat there and I cried for so long because it was the perfect song that could articulate how I was feeling. That’s the thing I needed to go ‘I’m not alone, I can keep going’,” she says.
“It’s interesting that that’s the thing that God used to encourage me to keep going because Billie is an atheist. We’re all so much more connected than we realise.”
There are no prizes for guessing what Ella wished for when the Make-A-Wish Foundation came knocking. Ella’s dream became a reality when she met Billie before her 2019 Melbourne concert alongside her parents Bec and Peter, sister Caitlin and best friend Melody.
The significance of the moment was not lost on Billie or her mum Maggie, who said to Ella’s mum “we can’t thank you enough for choosing to use your wish with us”.
“It was just amazing, it was the best day,” Ella says, “She was holding my face and I was crying and she said ‘don’t cry, I’m so happy that you’re here’. You can just tell the love she has for people. I got to go to my person who was part of my journey and I got to say thank you to her face, thank you for what you’ve done for me.”
Ella met her idol, music superstar Billie Eilish, in 2019. She says Billie, as well as her faith, got her through one of the lowest times of her life. Picture: supplied
Dance has been another shining light for Ella since the age of 3. She teaches dance five days a week and dreams of opening her own studio.
“My whole life revolves around dance because that’s the thing that brings me the most joy and gives me that purpose,” she says.
Ella shared her story at Cystic Fibrosis Geelong’s Cure Cystic Fibrosis gala ball last year, helping to raise $129,000 for CF research.
Cystic Fibrosis Geelong is a small volunteer-led committee, made up of parents, siblings and friends of children with CF, who hope to raise $150,000 at this year’s ball.
Ella says CF is so much more than what people share.
“It’s not just physical, it’s a huge mental game as well. It alters every aspect of your life, and my family’s life,” she says.
To other young people living with CF, Ella encourages them to not let it define them.
“I won’t sugar-coat it, it’s one of the hardest things to live with, but talk about it and surround yourself with those people who love you and will support you,” Ella says.
“Don’t be ashamed of it, CF is not something to be embarrassed about, it’s something that proves how strong you are.”
The Cure Cystic Fibrosis Ball is on July 27.
Buy tickets at trybooking.com/CPUUP