Nikki's story: Protecting my sons from a deadly heart condition

Nikki and Brian have raised three brave and kind sons. But a deadly, inherited heart condition threatened to rob them of everything they treasure most.

Now they're raising awareness so other families can be spared from heartache.

In 2005, Nikki and her husband Brian took their son Ayden, then 9, to a Paediatrician. “It was just a general check-up,” says Nikki. “The doctor listened to Ayden’s heart and to our surprise he discovered a murmur. Little did we know our lives were about to take a big turn.” Thinking little of the referral to see a specialist, Nikki and Brian visited a Paediatric Cardiologist in Perth.

“I remember the day vividly, Ayden was diagnosed immediately with hypertrophic cardiomyopathy, a life threatening heart condition that can cause sudden death in children. I still find it hard to consider that if he hadn’t been reviewed we would have lost our little boy.”

“There was no warning, no signs, no symptoms, no treatment options. We felt so isolated and helpless.”

Not only were the couple shocked to learn their eldest son was sick but they also discovered his condition was inherited, so they feared for their other two boys also. Lorne was seven years old and Nate was five. The couple was advised that there was nothing they could do for their other sons until they were nine, as they were too small to be scanned for the disease.

Just after Lorne’s ninth birthday, he was tested and thankfully there were no signs of disease. But when Nate turned nine, at one of Ayden’s cardiology appointments, his heart was checked.

“Clear as day I remember what the doctor told me; 'I don’t know how or why but you have two boys with hypertrophic cardiomyopathy'.

That was the start of the next chapter. I looked at Brian and said I couldn’t do it again. But we had no choice."

“It has now been 15 years of being a parent of two beautiful genetically conditioned hypertrophic cardiomyopathy children. It’s stressful for us but its opened up a new world. Instead of sport, it's music, it’s developed other skills in my boys, it’s made them who they are today. If it wasn’t for the condition they may be on completely different paths.”

15 years and 12 heart related surgeries, the family are now working with Professor Livia Hool and her team to help other families through the unknown world of the disease.

“We are always grateful that we are not one of the families who receive the diagnosis at autopsy.

We are so grateful we were able to find this underlying condition. If we had missed it, we would have lost two sons…. something no family, parent, grandparent, aunty, uncle, brother, sister, or friend should have to go through.”

Nikki and Brian live in Busselton, south of Perth. Ayden is studying a law/commerce degree whilst Lorne is going to be a chiropractor and Nate works in the mines. The boys are close, bound by their health experiences.

“We are very proud of our boys and hope our story helps increase awareness of the importance of research and the incredible work Professor Livia Hool and her team in Western Australia are doing to help find a treatment for those with hypertrophic cardiomyopathy.”