“She may be tiny, but Lily is streets ahead of most adults I know. She looks at the good in people, and doesn’t waste time thinking about the bad,” reveals Catherine Dunin, mother to 17-year-old cardiac arrest survivor, Lily Haskins.

Not knowing if today may be your last is a terrifying prospect for many of us, but for children living with life threatening disabilities like Lily, this is a daily battle.

“We are very lucky to have Lily survive because most kids don’t, or they walk out with severe brain damage. You can’t see it, it’s an invisible condition, so you live day to day with trepidation not knowing what could happen next,” says Catherine.

“You live with fear in the back of your mind, but we choose to live positively and to make the most of her life. We are just so lucky. She wasn’t meant to be with us, but we have her, so we don’t sweat the small stuff as much.”

Lily’s story begins one evening, just three days after she started Kindergarten. Jumping on the backyard trampoline with her older sister Bella, who was nine at the time, Lily collapsed and stopped breathing – she had gone into cardiac arrest at only six years old.

“Lily’s dad and I raced outside after Bella alerted to us that something was wrong, and we did CPR until the ambulance came which saved her life. She was flown by helicopter to the Sydney Children’s Hospital where they said she had a heart problem, but they had no idea what it was,” says Catherine.

“They implanted her with a defibrillator and a pacemaker and sent us back to Canberra. Six months later we were swimming in the local pool and Lily came up to me and said she feels funny, so I sat her up and she was thrown back because the defibrillator shocked her.”

Lily was rushed to hospital and diagnosed with a complex form of congenital heart disease known as CPVT or heart arrhythmia.

“The scariest moment of my life was Lily’s cardiac arrest. I don’t ever want to go through that again. My ex-husband suffered bad post-traumatic stress after because he performed most of the CPR,” says Catherine.

“We had to get rid of the trampoline because he couldn’t walk past it without shaking, and it took him years to recover.”

Although Lily has no memory of her cardiac arrests, she has been told the stories of her time in hospital and there’s no sign she’s ever going to let her heart condition slow her down.  

“I would like to travel when I’m older, and right now I have a job at a childcare centre after I started volunteering for them in the holidays during my school-based apprenticeship. I’ve been working there for two years now,” says Lily.

The years following Lily’s diagnosis were filled with uncertainty, and Catherine says they were quite isolating for her daughter, as other parents didn’t want her to come over and play because they were scared something could happen.

Currently a Year 11 student at Canberra College, Lily lives a relatively normal life, apart from having a pacemaker and defibrillator, which, she says, “protects her”.

Lily’s passion for volunteering led to her receiving the Young Canberra Citizen of the Year Award last year, and Catherine says it’s incredible her younger daughter won such an enormous award at just 15 years old.

“It makes me happy and a sense of purpose. Like I’m there to give them what they need and make sure their day is really enjoyable,” says Lily.  

The teenager undoubtedly has a bright future ahead of her, and with a heart of pure gold, all she wants to do is help other people with disabilities.

“I’ll probably go into disability care for young children with chronic illnesses because I have my own disability and have a connection with them. I want to give my time to them, and a lot of the children I used to work with didn’t have a long lifespan, so I want to give them as much care as they need,” says Lily.

Finding HeartKids was such a blessing to both Lily and her family. Every child longs for a sense of community and having a disability can be quite an isolating experience for some children.  

“When I was growing up, I wouldn’t get invited to any birthday parties or people’s houses because they were scared of my heart condition,” says Lily.

“I really enjoyed going on a camp with the other HeartKids because we all understand what we go through.”

Lily’s happy-go-lucky perspective on life has been harnessed by her early experiences, giving her an inspiring drive to help humanity.

“My advice for any other kid with a disability is to just live your life the way you want to live it, even with your challenges … just live your life the way you want to live it,” says Lily.

HeartKids’ annual flagship event, Sweetheart Day, is held on Valentine’s Day, 14 February, and raises awareness and funds for children with Congenital Heart Defects.

“If Canberrans could donate or buy some beads, it could go a long way for research and offering support to families with children who have heart conditions,” says Catherine.

Visit sweetheartday.org.au to get involved or donate to HeartKids.

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