Geraldton boy Jesse Micke’s cystic fibrosis diagnosis at five weeks doesn’t stop him from living life to full

When five-week-old Jesse Micke was going through 17 nappies in a day, second-time parents Tegan and Chris thought it was because he was being breastfed instead of bottle-fed, like their first child. It all changed one morning when Ms Micke received a call after her newborn’s heel prick test, a test done at five weeks to screen for a variety of genetic conditions — it revealed Jesse had cystic fibrosis. “Thomas the Tank Engine was on the TV and I just sat there. I didn’t know what to do. Chris was away so I called my dad and pretty much cried all day,” she said. In the first nine months of baby Jesse’s life, the family made seven trips to Perth for the initial appointments required to grapple with a cystic fibrosis diagnosis. There is a small community of “CFers” in Geraldton, but one of the rigid rules which must be observed is those with cystic fibrosis must not interact with each other. Ms Micke said the first leg of her son’s diagnosis was a “very lonely journey” with an amazing community around her in her friends and family — she just wanted to talk to someone who had gone through the same thing. Despite their circumstances, the family consider themselves lucky over how the illness has presented in their son. Jesse is now three. He is cheeky, chatty and his favourite colour is purple but Mum makes it very clear he is definitely not a Dockers supporter. Each time he eats, Jesse is given medication to help digest his food due to having limited pancreatic function. Without this, food moves through him quickly — which is why the family were going through up to 17 nappies a day. His body does not retain salt and he must replenish this through water with a supplement similar to Gatorade. “Salty water?” Jesse asks his mum when she offers him his drink bottle. “He loves it. He guzzles it,” Ms Micke said. At the beginning of the year, when Jesse turned three, he began taking a daily medication which is similar to Trikafta, a life-saving drug which is in the process of being approved for ages two and over. Each day, Jesse does two rounds of physio at home in which he sits with an oxygen mask on for 20 minutes to keep the mucus in his lungs moving. “But without all of those things supporting him he wouldn’t be the thriving little boy he is,” Ms Micke said. Despite the less-than-favourable circumstances, Ms Micke’s positivity and optimism shines through. “Looking at him, you just wouldn’t know,” she said. Ms Micke looks to the Australian healthcare system as one of the silver linings. The daily medication Jesse takes is $7 each month and the family receives subsidised travel allowances through the Patient Assisted Travel Scheme. 65 Roses Day is held each year on May 24, raising awareness of cystic fibrosis. Roses can be purchased from Queens IGA on the day, with funds going towards providing vital support for individuals and families suffering from the illness.