Sterling Heights family learns 4 kids inherited dad's unknown heart condition
STERLING HEIGHTS, Mich. (FOX 2) - A family in Sterling Heights has learned a majority of their kids inherited a potentially deadly heart condition from their father, and insurance refuses to pay for the only thing that could save their lives.
Watching the kids play, you'd never know they had a health condition that could stop their hearts at any moment. "We finally got [dad] tested; we got the kids tested and it came back that four out of the six have it," Stacy DeFillipo says.
All of this started to come to light about five years ago, when Jason DeFillipo was feeding the baby. "He said he stopped talking and he took this deep breath and went, 'Oh!' and put the baby down, and just literally slumped over," Stacy says.
With the help of dispatchers, Stacy gave him CPR. Jason's heart was stopped for 20 minutes, but miraculously he survived.
Doctors learned he had hypertrophic cardiomyopathy, which causes a thickening of the heart muscle and arrhythmia which can trigger a heart attack when you least expect it. They also found out children have a 50 percent chance of inheriting it.
Doctors conducted multiple tests on the kids, but a recent genetic test confirmed their worst nightmare. Four out of six of their children have the same illness.
"Awful," Stacy says she felt. "But relief because I know, and thankful because if it hadn't happened to him my kids could drop dead. Because these are the type of kids you watch on TV that play football and drop dead, and no one knows why. It's stuff like that because you don't see it at all."
Because Jason had a heart attack, doctors surgically implanted a defibrillator in his chest. But insurance won't cover the same for the kids.
"That's the tough part. It's not a common practice for them to place a defibrillator in a child, and it's so scary for a mother. So you have to wait," she says. Wait for an episode their child may not survive.
"To have four of them [with the disease], guilt. Just awful," she says.
And it's not that they don't have enough to deal with. Their youngest son, 6-year-old Ryan, was born with spina bifida. They were trying to gather up the funds to help make their home accessible for their so, when they learned about the heart conditions. So that has had to be placed on the back burner for now. And also before he was born, Stacy beat kidney cancer.
The only thing they can do is purchase two portable defibrillators they have on hand just in case the boys hearts stop, but insurance won't pay for it and they can't afford it.
Jason is on disability and with all the doctor's appointments and caring fo their youngest son, Stacy can only work odd jobs to make ends meet.
Relentless Detroit, which helps local families with kids who have life threatening illnesses, is holding a fundraiser later this month and has started a GoFundMe account.
Meanwhile, this close-knit family is keeping their faith.
"I know that God has my kids in his hands, and I know the reason it happened to my husband is so that they would be watched. But it's still hard, and we're still human, and we still worry because we're mothers. So I also know that if I were out somewhere and something were to happen and I didn't have that, I could lose my child."
If you'd like to make a donation to help the family, you can do so via the GoFundMe account here.
You can get more information on Relentless Detroit's Pandemonium in the Park fundraiser on July 20 here.