Three out of five members of the Wilson family are living with a serious heart condition.
Father Neil Wilson, 49, their second eldest, Lewis, nine, and youngest, Jasper, five, have hypertrophic cardiomyopathy.
This results in thickening of their heart walls, restricting the heart’s ability to pump blood around the body.
The family, from Ballarat in Victoria only found out after their youngest son was born when doctors thought he had a heart murmur.
When the results came back negative they conducted ultrasounds and a variety of tests which showed he had hypertrophic cardiomyopathy, and since it is a genetic disease, the whole family was tested.
Although three members of this Ballarat family are living with a heart condition, they only found out after their youngest son was born five years ago (pictured)
‘You can tell that this has effected Lewis’s confidence, he doesn’t talk that much and doesn’t want to talk about it either,’ Neil told FEMAIL.
Neil’s walls are a relatively safe 11 millimetres, Jasper’s walls are currently 17 millimetres thick and Lewis, who has the condition most severely, is 25 millimetres.
‘They say 30 millimetres is when you need to take some action so now we have to have a defibrillator with us at all times,’ Neil said.
‘Because Lewis is quite small, in about two or three years he’s going to have to have an operation to implant an ICD, which is like a defibrillator inside your body and we just don’t know anything beyond that.
‘It’s scary to know he has to have a heart operation in the future. I’m an adult and if you told me I would have to have one I would be terrified, I couldn’t imagine what it would be like for him,’ he said.
‘I just want to make sure he has a normal life.’
Their second eldest, Lewis, nine, (pictured left) and youngest, Jasper, five, (pictured right) have hypertrophic cardiomyopathy
The family has to carry a defibrillator with them wherever they go in case their heart stops
To monitor Lewis’s health they have to have a defibrillator at home and one that they take to school in case his heart stops or he passes out.
Lewis had always been an active child which means the news that he had to take a step back when it came to sport was hard to swallow.
This unfortunately means that Lewis will never be able to do sports that involve running for extended periods of time or run long distance.
‘I know Lewis is pretty good at self regulating, he’ll stop and take a break to gather his breath and then he’ll get up and go again. You tire a lot quicker than most people,’ Neil said.
Jasper’s walls are currently 17 millimetres thick and Lewis, who has the condition most severely, is 25 millimetres
Lewis had always been an active child which means the news that he had to take a step back when it came to sport was hard to swallow (pictured left)
To monitor Lewis’s health they have to have a defibrillator at home and one that they take to school in case his heart stops or he passes out
‘How you manage it depends on the severity of it. He rides his scooter and plays with the footy in the back yard with me but he will never be able to do things like soccer, or a triathlon,’ he continued.
‘Since Jasper is only five he doesn’t really know he has it, he knows he has to go to the doctor every six months and he’s familiar with all that but because he’s on the spectrum we have to figure out the right way to tell him.’
Neil explained that they’re lucky that they know they live with the condition, as many people don’t know they have it until it’s too late.
‘There are often no symptoms until you have a heart attack, which means it’s far better to know you have the condition so you can modify your sports program and your lifestyle,’ Neil told FEMAIL.
Neil explained that they’re lucky that they know they live with the condition, as many people don’t know they have it until it’s too late
Some of the main symptoms, if you know what to look out for, can be severe chest pain, fainting and at the most extreme, a heart attack.
Although the mother, Stephanie Wilson, 40, carries the gene she doesn’t have the disease, and neither does their oldest son, Archie.
When the family were told they needed the defibrillators, family friend Sally Howe wanted to help remove the financial stress so started a Go Fund Me page, which raised the money needed in just a few days.
The Wilson family were lucky enough to find out members of the family had the disease because doctors thought that when Jasper was born he may have a heart murmur
The family also contacted Defib for Life, who provide high quality defibrillator packages and advocate for installation in every public place.
Although the family could afford the first one they couldn’t the second, but the organisation sent out a second defibrillator straight away and allowed the family to pay them back whenever they could.
Defib for Life also helped to train each family member how to use it.
‘It’s a bit of a complicated life but we’re very lucky we have such great medical support and it’s so much better to know what we’re dealing with so we can manage it,’ Neil said.