Barden Ridge father Andrew Brodala is no experienced cyclist, but he will tackle one of the most challenging rides this year, when he powers ahead for his son.
Mr Brodala will jump on his bike on November 4 in the Captain's Ride, an annual charity event that raises money for the Steve Waugh Foundation.
Each year the foundation hosts an 800 kilometre, six-day on-road cycle tour through Victoria, completed by a team of 70 riders to raise money for children with rare diseases.
It is a cause close to the father's heart. Mr Brodala's eldest son Lachlan, age six, has Schuurs-Hoeijmakers Syndrome, commonly known as PACS1. Those affected have neurological and behavioral problems. The condition is caused by a gene mutation. The PACS1 protein is most active during development before birth. The mutations are thought to impair the protein's ability to aid in the transport of certain molecules and proteins.
Lachlan is one of 123 diagnosed in the world and one of five in Australia. When he was diagnosed at age three, there were only 27 cases worldwide.
It was after he was born at 35 weeks, the family noticed something was awry.
"He had health issues early on," Mr Brodala said. "He had his first documented seizure on his due date. We spent the first few years in and out of hospital, trying to get symptoms under control, but we didn't know what it was. Because testing wasn't available in Australia, we ended up sending our blood and DNA to Germany. Thankfully that's changed now and testing is available here."
Mr Brodala and his wife Amber also have a younger daughter, Matilda, 19 months, who was conceived via IVF to eliminate risk of having another child with a genetic disease.
Lachlan has been supported by the Steve Waugh Foundation for the past four years, getting assistance with occupational and speech therapy sessions, which is improving his ability to sit and walk.
Mr Brodala is putting on his cycling shoes for the first time, to support the foundation's work and give back to the charity that has brought the family so much hope.
"I actually bought my bike in February and have only just started to learn how to road ride," he said. "I'm very much a novice to the whole event."
He says his family is grateful for the support it has received through the foundation.
"It started with physio and has now progressed into financial backing of getting an assistance dog for Lachy," Mr Brodala said.
"He hasn't been diagnosed with autism but he does have autistic traits so a dog will help calm him when he has a meltdown and needs to be consoled."
Before the foundation came along, the family relied on government support, which was limited, Mr Brodala said.
"We had to utilise whatever we could, and unfortunately when that exhausted, everything was out of our pocket," he said. "It wasn't cheap. When we qualified with the foundation, it was a relief. Lachy now has the same, consistent therapists. They really see his progress and he builds rapport with them."
Although he has a moderate intellectual disability, Lachlan thrives in the support unit at Kirrawee Public School. The family has also developed friendships with others overseas, who are living with PACS1.
Come cycle day, Mr Brodala says his son will be his loudest cheerer.
"It will be absolutely gruelling but I intend on doing every kilometre. I'm going to power through it," he said.
"Lachy has been choosing my training jerseys - I've been wearing Spiderman and The Hulk. He knows I'm going to do a big ride. He calls Steve his special friend. It will also be a nice holiday for him and my wife Amber.
"Our goal was to get to $20,000 and we have just gotten to under $22,000. Anything more than that is a bonus."
