Sport
12 March, 2025
Team Ivy walks for Rare Disease Day
A HAPPY crowd of 30 people, including toddlers and bubs, as well as a couple of dogs, rallied together as Team Ivy, to walk for Rare Disease Day along the Mareeba Rail Trail on Sunday.
Ivy’s Mum, Christine Byrnes, organised the walk on behalf of her daughter, who has has a rare chromosomal unbalance known as Trisomy10 Monosomy 4.
For Christie the event is a celebration of her daughter’s tenacity.
When doctors discovered the anomaly – carried on the side of the father’s genetic history - they predicted the baby would likely miscarry, or be stillborn, or at best survive two weeks.
Ivy will turn 17 at the end of this month.
The family began attending events for Rare Disease Day when Ivy was three.
The day was created on 29 February, 2008, in Europe, to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. It is celebrated on the last day of February, as it falls on a rare leap year day, and is now a worldwide movement.
Christie said they attended many events held in Cairns over eight years when they lived near Kuranda. But schoolteacher Christie and the family decided to move back to Mareeba, to be closer to family and friends.
That’s when Christie “put the call out” to create Team Ivy, to mark Rare Disease Day in Mareeba with a walk along the Rail Trail.
She said her family loves the trail – Christie has three daughters – and they go on regular park runs.
This is the fourth Team Ivy Walk, (last year they couldn’t go because Ivy had spinal surgery) and it had been a great morning.
“We have a lot of family and friends who come each year, it resonates with a lot of people,” Christie said.
“We had another little guy come along with his family, who has Angelman’s syndrome (a genetic change syndrome), which is a really good way for them to meet people.”
As for Ivy, she thoroughly enjoys herself.
Ivy’s condition has left her with affected intellect, physicality and speech.
“She’s delayed in every aspect,” her mother explained. “She’s had upward of 30, maybe closer to 40, medical operations in her life.
“She’s a very a happy, cheeky girl; very social and loves interacting with everyone,” Christie said.
And she enjoys the simple things in life, such as ice cream.
“She’s a regular at the Emerald Creek Ice-creamery,” Christie said. “We should buy shares in the place.”
Ivy also loves going to the airport and watching the helicopters swishing their rotors.
And she loves art. This year she will be joining the art society at the Centenary Park.
Now that Ivy has finished school, she plans to volunteer with her carer at the Park Runs.
“We’ll see how she goes,” Christie said. “A lot of people know Ivy.
“Mareeba is a nice community.”
