I FIRST learned about Sophie McAliece’s Cystic Fibrosis diagnosis 15 years ago in April, 2006.
At the time I was a cadet journalist and Sophie’s mum, Carolyn, invited me to spend the morning with her family in order to gain awareness and understanding of the disease.
It wasn’t the first time I had heard about the disease, but until you see what CF individuals experience on a day-to-day basis, it is impossible to understand even a little bit what life can be like for them.
As a 20-year-old country kid, two years into my cadetship and relatively naive to the big, wide world, I quickly realised life could be very unfair.
I recall, even to this day, how it didn’t seem right that a cheeky and cute one-year-old had to be subjected to daily medication and physiotherapy in order to try and live a healthy life.
Fast forward 15 years and Sophie has blossomed into a beautiful and bright 16-year-old and shares her Cystic Fibrosis journey with her brother, Gabe.
The story I wrote those years ago has remained one of my favourites and most memorable in my career as a journalist, and this week I was very excited to catch up with Carolyn, Sophie and Gabe and revisit their experience with the disease.
– ZOEY ANDREWS
IN Australia, one in every 2500 babies are born with Cystic Fibrosis.
In Mildura’s McAliece family, two of their three children have the disease.
Gabe, 12, and Sophie, 16, both have it while older sister Lily, 19, doesn’t.
“Cystic Fibrosis (CF) is an inherited disease that primarily affects the lungs but it also affects the digestive system, liver, pancreas and other organs,” mum Carolyn explains.
“People with CF produce a sticky mucus which clogs the airways and traps germs like bacteria, leading to infections and other complications.
“They can also develop CF-related diabetes.”
For Gabe and Sophie, and other CF sufferers, day- to-day life looks different to others.
“It can be taxing on them. They do physio twice a day,” Carolyn said.
“This is using a saline solution in their nebuliser, attached to a flutter device.
“They blow into the flutter device which opens their lungs pushing the saline solution right down into the lower lobes to help push up and out the sticky mucus their bodies produce.
“They take medication and antibiotics via nebuliser twice a day.
“They also swallow around 40 tablets a day to help keep them healthy.”
While the impacts are major health wise, the blows keep on coming mentally, physically and socially.
“Mentally it is really hard, especially as they grow older and understand what it takes for them to get through the day,” Carolyn said.
“CF is exhausting.
“Coughing because of lung infections is hard, especially in this COVID19 era.
“You can get constant stares because of a cough, that is not contagious but everyone thinks you have COVID.
“It is hard trying to maintain friendships when you’re constantly in hospital, it’s trying to keep up with everyone but your body is so fatigued you can hardly get out of bed.
“It’s going out to eat with friends but you have to take your tablets in front of everyone and when you’re a teenager, it’s the last thing you want to do.
“It is a constant struggle.
“It’s being told ‘you look so well’ when on the inside you feel like you’re falling apart and struggling to breathe.
“Anxiety can be crippling, trying to be ‘normal’ and fit in like a teenager but you are constantly worrying about your health.
“CF is an invisible disease.”
Gabe and Sophie have had re-occurring lung infections this year, with a particular bug called Acromobacter Xylosoxidans that has been quite tricky treat.
Carolyn said because of the bug they are both growing, their lung function capacity has been slowly declining.
“In order to treat this they require IV antibiotics, nebulised antibiotics and oral antibiotics,” Carolyn said.
“They also need intensive physio to help clear the lungs of the mucus.
“This can include using their flutter devices as well as the c-pap machine and physical exercise to get the lungs to open and bring the mucus up.”
The pair have spent 14 weeks of the last 10 months in hospital, which Carolyn said is more than usual.
“Because of the decline in Sophie’s lung function she requires regular admissions (called a ‘tune up’ – like a car, she needs regular servicing) every three months for two weeks at a time,” she said.
“We will have one more admission this year, in December where both Gabe and Sophie will receive treatment.”
Admissions to the Royal Children’s Hospital, where the pair’s team of respiratory specialists are located, mean the family spend a lot of time away from home.
“It is hard – trying to ensure the kids are keeping up with their school work, making sure everything runs smoothly at home, ensuring friendships are maintained and working while caring for the kids,” Carolyn said.
Their team in Melbourne consists of doctors, dietitians, pharmacists, psychologists, social workers and the infection diseases team, who ensure they receive the right medications, and these individuals all band together to ensure Gabe and Sophie live the healthiest lives they can.
It’s an effort that Carolyn, along with her husband Jeff, are appreciative of.
“We also have a great team here in Mildura with our GP, paediatrician and recently with the amazing nursing staff at the paediatric ward,” she said.
“Our paediatrician is working really hard to help us feel comfortable in spending some of our tune-up time in Mildura, to help make life that bit easier being closer to home.”
While Gabe and Sophie both share the connection that is CF, they also have a special bond with their sister, Lily.
Although currently in Adelaide at University, when able, Lily often steps up, helping her siblings with their treatment or taking on the role of “mum” to assist Jeff with running the home when hospital visits are required.
“People with CF are not allowed to socialise together (yes, like the movie ‘Five Feet Apart’) due to cross contamination reasons, which can be isolating,” Carolyn added.
“Gabe and Sophie being siblings don’t keep the ‘five feet apart’ but understand that they can’t share things like a bag of lollies or use the same plates etc.
“They also can sympathise with each other when they don’t want to do their physio treatments.”
As their mother, Carolyn said she is so proud of all three of her children; Gabe and Sophie for how they handle CF and Lily for the support she provides.
“They understand what they need to do to stay as healthy as they can,” she said.
“Sophie is wise beyond her years in understanding how her body works and her knowledge of cystic fibrosis.
“She spreads awareness whenever she can about this little known disease through public speaking and her Instagram page ‘sophiecfysta’.”
ABOVE: Gabe, left, with sister Sophie, who both have Cystic Fibrosis with mum, Carolyn. All can still smile despite the daily challenges that confront them. A truly inspiring trio.
What is cystic fibrosis?
An inherited life-threatening disorder that damages the lungs and digestive system.
Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts and passageways.
Symptoms vary and can include cough, repeated lung infections, inability to gain weight and fatty stools.
Treatments may ease symptoms and reduce complications. Newborn screening helps with early diagnosis.
It can be treated, but not cured.