Sarah makes May her special month May is Cystic Fibrosis Awareness month and it holds a special place in Emergency Medical Dispatcher Sarah Davies-Richards’ heart, as her own four year-old son Lachlan has Cystic Fibrosis (CF). This page
■ Sarah and 4 year old Lachie. Oppposite, clockwise from top left to bottom left
■ Sarah, Lachie and Nola. ■ Boredom Buster Bags are welcomed by kids of all ages like Riley. ■ Lachie’s 2nd admission. ■ Little “Ironman” with his mum.
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The Kedron-based EMD is keen to raise awareness for CF and is also collecting for a Boredom Buster toy drive for children with CF who end up being hospitalised for longer periods of time. Cystic Fibrosis is a recessive genetic condition which mainly affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus. It’s the most common, life-limiting genetic condition affecting around 3,500 Australians, and around one in 25 people carry the recessive CF gene. Babies born today with CF can expect to live well into adulthood, and while there have been significant advances in treatment and management, there is still no cure. “In October 2017, my wife gave birth to our son, Lachlan, or Lachie-John Robot Dinosaur ... as he prefers to be called,” Sarah said. “Three weeks later our world was turned upside down when we received the life changing phone call advising us Lachlan had Cystic Fibrosis. “Like many other children with Cystic Fibrosis Lachie is one of the bravest, most resilient children you will ever meet.” Sarah said so far Lachie has endured six admissions to Queensland Children’s Hospital (several requiring complete room isolation), three nasal gastric tubes for nutrition / bowel blockages, four PICC line surgeries (for aggressive antibiotic treatment), one very fast ride in an ambulance, countless blood tests and x-rays and daily physiotherapy with ongoing medications. And the last two years of COVID in our community has created even more complexities for her family. “Covid has been an extremely challenging time, not just in trying to maintain Lachlan’s health but also in accessing medications, working around hospital admissions (only one carer during a 24-hour period) and attending scheduled Cystic Fibrosis Clinics, either one carer or via ZOOM Meetings,” she said.
Autumn 2022
“Because of the threat of COVID, we have had to remove Lachlan from day-care and kindergarten numerous times over the past two years and it’s been extremely challenging juggling our work and Lachlan’s ongoing medical requirements. “Cystic Fibrosis is referred to as “The Lonely Disease”, and it’s very difficult to explain to him why he can’t see his friends or go certain places as it might make him very sick – he’s so young. “As Lachlan gets older, he won’t be able to connect with other children with Cystic Fibrosis because of the risk of cross infection, which was highlighted beautifully in the movie Five Feet Apart.” Sarah said her family has been extremely fortunate to have an amazing care team at QCH. “Last year I accepted a position with Cystic Fibrosis Queensland as a Community Support Person, and my role is to speak with parents of newly diagnosed CF patients to provide support, assistance, and advice,” she said. Cystic Fibrosis Queensland’s Header of Membership and Services Vicki Elson-Green said the organisation provides support to around 471 children under 18 years old with CF in Queensland, the Northern Territory and Northern NSW – anyone who attends Queensland Health for clinics.
