Port Kennedy boy Aidan Wood has shared his story of life with cystic fibrosis ahead of awareness campaign 65 Roses Day. In 2011, at just six weeks of age, Aidan’s parents received the news that he had been diagnosed with cystic fibrosis. Cystic fibrosis is a rare genetic disease that affects multiple organs in the body, primarily the lungs, that is caused by a build-up of thick, sticky mucus, which can lead to infection and, in some cases, permanent damage. More than 3600 adults and children live with the incurable disease Australia-wide and more than 400 of those are from WA. Mum Kathy Sgro said she knew after her son’s birth something wasn’t quite right, but receiving the official diagnosis was absolutely “heartbreaking”. “We were aware something wasn’t quite right, parent intuition; Aidan was struggling but it was our first child,” Ms Sgro told the Sound Telegraph. Aidan was hospitalised for three weeks in 2013 and another three in 2017 due to complications from the disease. Ms Sgro said despite this, the family has been “very lucky with Aidan’s health” and well supported by the cystic fibrosis team at Perth Children’s Hospital over the years. “We take the challenges on a day-to-day basis and not focus on the long term,” she said. “Cystic Fibrosis WA has been a great support from the onset with in-home support.” From in-home support to online kid support groups, Ms Sgro said these are just a few of the amazing things they do. Not long after his 12th brthday, Aidan received a life-changing call that he had been approved to start taking the Trikafta medication. In March 2021, the Trikafta was approved by the Therapeutic Goods Administration, however it wasn’t until April last year that the miracle drug was listed on the Pharmaceutical Benefits Scheme for kids aged 12 and over. From May 1 this year, that age range was extended to children as young as six. This means children aged six and over can now access the medication for no more than $30, or $7.30 with a concession card, instead of costing families more than $250,000 per year without subsidy. Despite the challenges he’s faced at such a young age, Aidan said it was important for him to share his story of what it is like for kids living with condition. “Life with cystic fibrosis is pretty normal: sport, school, but I have to take medicine, 30 plus tablets a day, with all the food I eat,” he said. The 12-year-old also undertakes two physio sessions a day and has a nightly nebuliser to assist his breathing. Aidan hasn’t let the disease stop him from doing the things he loves, one being his favourite sport of basketball, playing almost any chance he gets. “I try not to let (it) stop me so I do everything other kids do,” he said. Aidan said if he could give any advice to other kids living with cystic fibrosis it would be to not “let it stop you from enjoying your life (and) get out there”. The month of May is National Cystic Fibrosis Awareness Month and 65 Roses Day is on Friday, May 26. On the day, roses can be ordered or virtual roses purchased from cfwa.org.au or rosegarden.org.au and help CFWA to work towards their vision of ‘lives unaffected by cystic fibrosis’.