Zarley Peters is one of few people who can say they’ve died.
At 12-weeks-old, she underwent open heart surgery after being diagnosed with congenital heart disease.
A few weeks later, she suffered a complication, and her heart stopped beating.
“We were told by medical staff we would lose her and to prepare for that and to tell our family,” her mother Mel Trepka said.
“It was very touch and go, she was in Westmead Hospital for the first nine months of her life.”
The now 12-year-old is living a relatively healthy life, but that anxious feeling still plagues her parents.
“We just sit and we wait and we watch, it feels like a time bomb,” Ms Trepka told the Newcastle Weekly.
“We are hypervigilant but try not to wrap her in cotton wool, we want her to feel like she’s normal.”
Zarley has been chosen to be the Newcastle ambassador for this year’s national HeartKids Two Feet and a Heartbeat charity walk on Sunday 18 October.
Because of COVID-19 restrictions, participants are encouraged to walk in their local neighbourhood, while there will be online events before and after the walk.
They include warm-up yoga, a welcome to country, memorial service, and entertainment.
“I feel proud and happy that I get to represent HeartKids,” Ms Peters said.
“I am grateful that everyone helped me get through it and I’m just thankful for being here.”
Participants are given the option to either walk four kilometres in honour of the four lives lost each week to congenital or acquired heart disease, or to challenge themselves with an eight-kilometre walk in recognition of the eight babies who are born with the disease each day.
All funds raised will help to support the expansion of HeartKids’ family support programs across Australia.
HeartKids representative Holly Williams says the programs provide essential support services for thousands of families nationwide and are even more critical during times of COVID-19.
“Raising funds for HeartKids provides families with greater access to support services and programs that help families feel less isolated, navigate their new normal and build resilience, so they are less reliant on the medical system,” Ms Williams said.
“It can be particularly important for those in regional and rural areas. Many families face financial strain [through] no fault of their own and COVID-19 has made it especially hard.
“HeartKids is here to make a difference, giving families a helping hand for the wellbeing of their child and the wider household.
“It’s important not to forget that parents with CHD children require emotional and psychological support, especially during the first few years of their parenthood, and HeartKids is here to assist them in the most difficult times.”
For more information about Two Feet and a Heartbeat, including how the virtual option works, click here.