Despite three of their five family members suffering a serious heart disease, Stephanie and Neil Wilson consider their family to be very lucky.
Neil, Lewis, 9, and Jasper, 4, have hypertrophic cardiomyopathy which results in thickening of their heart walls, restricting the heart’s ability to pump blood around the body.
It is an inherited disease with few symptoms that is often not diagnosed until an otherwise-healthy young person dies suddenly.
The disease is most severe in Lewis, whose heart walls are 25mm thick compared to the average adult’s 12mm. At their last cardiology appointment the family were told that Lewis must carry a defibrillator with him at all times in case his heart stops.
“As a mum it’s pretty confronting to be told you have to have a defibrillator on hand at all times for your child,” Ms Wilson said.
“It’s a disease that you usually don’t find out about until it’s too late, so kids playing on the footy field who suddenly die, they usually have this underlying condition.”
Until Jasper was born the Wilsons had no idea they had a genetic time-bomb ticking within their family.
“We actually consider ourselves to be really lucky that when we had our third child Jasper, it was discovered in him.”
Ms Wilson had a fever during labour so a pediatrician was on hand to check on newborn Jasper’s health. The pediatrician detected a heart murmur and further testing discovered it was more serious, with the eventual diagnosis being hypertrophic cardiomyopathy.
“As a mum it’s pretty confronting to be told you have to have a defibrillator on hand at all times for your child.”Stephanie Wilson
Because it is a genetic disease, the whole family were tested with Lewis and Neil both coming back positive.
“We are a bit of an unusual case because I actually carry the gene but I don’t have the condition, whereas my husband has the condition but not the gene though he does have three variants of the gene. Two of my children have the gene, the three variants plus the condition.”
Neil has a mild form of the disease but Lewis and Jasper have it more severely. Eldest son Archie, 11, does not have the condition.
The disease means Lewis can not play sport. He can do PE lessons at school but must be vigilant and stop if he feels out of breath.
“Lewis was our most sporty child of all and wants to be involved in all that kind of stuff, so it’s pretty hard for him,” Ms Wilson said.
Lewis will need surgery in a few years, but he is too small to undergo it safely so the defibrillator is a vital measure to ensure his safety until then.
“If they did the surgery now it would be open heart surgery. They look at three different risk factors and Lewis has one to two, so they want to try to hold off so the surgery is not as dramatic,” Ms Wilson said.
Jasper is also likely to be ordered to carry a defibrillator in the coming years as his disease worsens.
The family currently have two defibrillators, one in their car and another which goes between school and home.
When the family were told they needed the defibrillators, family friend Sally Howe jumped in to remove the financial stress from the family’s emotional burden and started a Go Fund Me page which raised the money needed in just a few days.
“I couldn’t even look at the Go Fund Me page because I was too distressed and emotional about it, and it just totally amazes me the support we’ve had. I’m blown away and very grateful,” Ms Wilson said.
When Ms Wilson contacted Defib for Life they dispatched a defibrillator straight away, regardless of the family’s ability to pay.
“They were amazing. I rang the founder Sue Buckman and told her what we had been told and she said she would pack it up straight away even it if took us three years to pay off because she wanted us to have it immediately,” Ms Wilson said.
Any money raised through the Go Fund Me campaign in excess of what the family need for defibrillators will be donated to Defib for Life.