Lewis Wilson is a sport-obsessed 10-year-old. Looking at him, you would think he is just like any other boy his age, but Lewis has a relatively rare heritable heart condition called hypertrophic cardiomyopathy.
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The condition means the walls of his heart are abnormally thick, meaning it is difficult for his heart to pump blood around his small body. At his last cardiology appointment, the walls of Lewis' heart were measured to be 28 millimetres thick. In comparison, the average thickness of an adult heart is about 11 millimetres.
On a warm Sunday in March, while on a trip to Altona beach, the family's worst nightmare played out: young Lewis had a heart attack.
His parents, Neil and Stephanie, who were close by when their son went into cardiac arrest, immediately started chest compressions and applied a defibrillator. After one shock, Lewis was revived and rushed to hospital by ambulance.
Lewis remained at the Royal Children's Hospital for 10 days, during which time open heart surgery was performed and a cardiac pace maker and implantable defibrillator were placed inside his chest.
It has been a long journey for the family, who found out about Lewis' condition when their youngest son, six-year-old Jasper, was born.
Doctors determined Jasper had the condition at birth, with both parents and older brothers Lewis and Archie subsequently tested for the disease.
Shockingly, it was discovered that both Lewis and Neil also have hypertrophic cardiomyopathy, a disease which comes with few symptoms but can result in sudden death in otherwise healthy people.
Neil has a mild form of the condition but Lewis' diagnosis is much more serious and the walls of his heart have continued to thicken.
We didn't know about the condition until the birth of our youngest son so it was lucky we had him because really, he saved his brother's life.
- Stephanie Wilson
In 2017, after one of Lewis' appointments, his parents were told that they needed to carry a defibrillator with them at all times due to the risk of Lewis going into cardiac arrest.
A friend crowdfunded for two of the machines to ease the financial burden on the family - one for the home and one for the car - and the family has carried one with them everywhere ever since.
But for Ms Wilson, the constant need to carry the defibrillator is taxing.
"Not only is it heavy, it's two kilograms so it's a physical burden, but it is also a reminder of the emotional burden we carry everyday," she said.
The family will need to continue to carry the machines everywhere they go for Jasper, who his parents expect will have the same operation in a couple of years.
Lewis has recovered well since his operation earlier this year and is now back at school, but due to his condition, he is unable to participate in sport and PE classes. This is difficult because he loves sport so much.
"He's not even allowed to run around the playground with his friends or shoot hoops. He can't ride a scooter or a bike either," Mr Wilson said.
"He still has the same great disposition and sense of humour. He hasn't lost any of that but it's just heartbreaking because you want him to be out there playing but it's something he just can't do."
Instead, he has learnt to enjoy playing Lego, computer games and watching sport on television.
His favourite AFL team, Richmond, has invited the family to tiger land next week, where Lewis will meet all of his favourite players after watching the team train.
His parents are grateful for all of the support they have received from the community and are hopeful about the future. Their hopes for their son are that he grows to be happy with whatever he chooses to do and is always surrounded by good friends and family.
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