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“I was the youngest person on the cardiology ward by 30 years!”

At just 35 years old, Tanya's busy life as a mother of two little boys was turned upside down by some seriously worrying symptoms. Her heart was beating much faster than it should have been and often palpitating out of time.

Tanya Neeley stands, smiling, with her arms around the shoulders of her two sons. The sun is setting and the sea is visible behind them.

Family history of sudden, premature deaths

With a family history of sudden deaths of women under 50 in her family, Tanya knew she needed to seek help urgently.

"It was one of those things nobody ever talked about," recalls Tanya. "One day, my grandmother dropped dead in the kitchen. She was only 40. When I was 23, my mother died too – she was 48."

When Tanya first started to experience heart palpitations as a teenager, it was easy to write them off as anxiety. Especially when there appeared to be no significant issues when she was monitored. But after losing her mother to heart disease in her early twenties, she decided to look into it further.

Tests reveal that all was well

"I talked to a cardiologist to make sure nothing was wrong with me before I started having children," says Tanya. "The results of my MRI and a bunch of other tests all came back fine. But then, after my kids were born, I started having issues with tachycardia, which is an increased heart rate with severe palpitations."

This was when Tanya's cardiologist decided she needed a life-saving pacemaker and an implantable cardioverter defibrillator (ICD) surgically inserted into her chest.

"It's tough to deal with, psychologically," she says. "Knowing that there's a machine in your body that will give you an electric shock to keep you alive when your heart gets out of rhythm. Especially at only 35, with a two and four-year-old to look after."

Diagnosis of hereditary condition revealed

Tanya was then diagnosed with familial dilated cardiomyopathy. This discovery explained the history of the sudden, premature deaths of women in her family.

"Nobody connected the dots that my mum and grandmother's deaths were because of the same heart condition," she says. "It was too hard for my grandfather to talk about my grandmother dying, so we never knew."

Familial dilated cardiomyopathy happens when the muscle becomes weak in the heart's chambers, stopping the heart from working efficiently. This condition ultimately results in heart failure – and for some, the first symptom is sudden cardiac death.

Concerns about her family's future

Since receiving her ICD and pacemaker, Tanya has been able to live a reasonably normal life. She sometimes struggles with everyday activities such as climbing stairs or hills. And given familial dilated cardiomyopathy, she worries about her family's future – especially her two sons, Fynn, 16, and Cooper, 14.

16-year-old Fynn was recently diagnosed with heart complications of his own. But, thanks to an early diagnosis, it can be monitored by innovative technology.

"I noticed Fynn's symptoms when he was doing swimming training," says Tanya. "He seemed to get sick after practices, and I could see from the pulse in his neck that his heart rate was going super fast, which was a huge worry for me."

Knowing her own diagnosis could be passed on to Fynn, Tanya immediately sought help from a cardiologist.

Amazing advancements in medical technology

"It's amazing to see how diagnostic techniques have changed, even since I was a teenager. I had to wear this bulky chest harness when they started monitoring my symptoms. In contrast, Fynn has since had a cardiac device fitted into his chest, no bigger than a USB stick!"

While Tanya is grateful for the care Fynn receives, it still weighs on her, as a mother, knowing how this heart condition could affect him moving forward.

"It's hard knowing that you have something like familial dilated cardiomyopathy," she says. "And knowing that your kids could have it. Fynn isn't allowed to do things like rowing anymore because it's too much for his heart. It's really difficult to digest."

But despite all this, Tanya has hope that thanks to the constant development in medical technology, she and Fynn can live long, happy lives.

"Heart disease affects so many people. Any age, anywhere. My quality of life, the care I've had, and the care my children have had have been so much better than what my mum experienced. It's improved in such a short amount of time," she says.

Supporting the Big Heart Appeal

"It's amazing what we can do if we can come together and give a little bit. It makes such a huge difference to families. Everyone would know someone who has been touched by a heart event."

Tanya will join thousands of other kind-hearted Kiwis as a street collection volunteer in this year's Big Heart Appeal street collection on Friday 24 and Saturday 25 February. You can help countless Kiwis living with heart disease, like Tanya, by supporting the Big Heart Appeal today.