- Going the extra mile with Zach
Going the extra mile with Zach22/03/2019 – Patient stories
For most 13-year-olds, boarding a plane is something that ignites excitement, wonder and anticipation for what their place of landing holds.
For 13-year-old Zach Armstrong, his reality is much different.
Diagnosed at the age of two with a rare genetic disorder, fibrodysplasia ossificans progressiva, Zach’s experience with flying has become associated with long visits to Lady Cilento Children’s Hospital, undertaking test after test, in the hopes of finding a treatment that makes his life a little easier.
The condition, also known as stone man syndrome, causes Zach’s ligaments and muscle tissue to turn into bone, progressively paralysing his body.
“Zach was originally on a natural history study, which is where they collect data and that was over a four-year period so we were travelling to Brisbane once a year,” said Zach’s mum Laurin.
“Last year we got approval for a drug trial here in Australia and we’re now in phase three, which is a real positive sign.
“He’ll be on the drug trial for two years, which requires us to travel twice a year to Brisbane.”
“His face lit up when he saw the 1960s Kombi in our driveway on our most recent trip in January,” – Zach’s mum Laurin
Despite the everyday challenges that Zach faces, it’s impossible not to get caught up in his spirit and positive attitude.
CareFlight’s Brendon Vagg is one of the many people involved in Zach’s transport to the hospital, who has been touched by Zach’s story.
Transporting Zach and his family from their home in Sydney to the hospital in Brisbane, Brendon and the CareFlight team always try their best to go above and beyond to ensure Zach’s experience is a little less daunting.
“After the first transfer he was very reluctant to go because the barrage of tests so the CareFlight team started coming up with different ways of trying to make the experience better for him,” said Brendon.
From stretch hummers, a fire truck, a kombi, to military trucks and a police escort, CareFlight have surprised car enthusiast Zach with some of his favourite vehicles.
“His love of cars started when he saw the Herbie movies when he was two,” Laurin laughed.
“He’s addicted to Volkswagens, he knows them all.
“His face lit up when he saw the 1960s Kombi in our driveway on our most recent trip in January.”
Forming a special bond after their first meeting, Brendon and Zach keep in regular contact.
“The way I look at it is, it’s the better part of the job,” added Brendon.
“Making his life a little happier, it makes me happier.”