Eleven-year-old Aaliyah and her sister Mya, 9, of Spring Mountain have a lot in common like their love of playing, puzzles and adventuring outside – and cystic fibrosis, a genetic condition that affects the lungs and digestive system.
Both girls were diagnosed with the condition a few weeks after their births after having a sweat test, which measures the levels of chloride in sweat (a higher chloride level indicates cystic fibrosis). Both girls were also born with bowel blockages, which is a complication of cystic fibrosis.
“We were aware the girls’ dad was a carrier of two mutated genes before Aaliyah was born. I was screened before I was pregnant and had none of the genes that get tested for in Australia. They said there was a one in 500 chance of having a child with cystic fibrosis,” said the Aaliyah and Mya’s mother, Hannah.
“I wasn’t surprised when I was given their diagnosis because of all the testing beforehand. I remember thinking ‘one step at a time’. Then, it was about learning more about cystic fibrosis and figuring out how best to help them. With Mya, I was hoping she didn’t have it, too, but then when she was born with similar symptoms, I felt at least I knew what to do to help her.”
People with cystic fibrosis develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections, leading to irreversible damage.
Every day the girls have to take medication and do 20 minutes of physio and airway clearance exercises in the morning and evening (before and after school on week days) to loosen and clear the mucus in their lungs.
“Aaliyah also has bronchiectasis – a condition in which the lung’s airways become damaged, making it hard to clear mucus – and constantly has bacteria which needs treating. The best her lung function has been lately is 74 per cent of normal capacity,” Hannah said.
“They are both pancreatic insufficient and have issues with their digestive system along with a loss of appetite at times, as well. At the moment, Aaliyah comes to the hospital every three months as she is trying a new treatment and hasn’t been very well.”
Despite their CF challenges, the girls are like any other kids their age and love playing outside, doing puzzles, watching tv and playing games. Hannah says the girls are very resilient with everything they go through and never give up when they face a new obstacle.
“Sometimes they act like they don’t have cystic fibrosis and that it doesn’t bother them – and that’s inspiring.”
Cystic Fibrosis Queensland