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PLYMOUTH MEETING, Pa. (CBS) — It’s been nearly nine years since Phyllis Sudman of Plymouth Meeting put her 3½-month-old son, Simon, down for a nap. When she came to rouse him, he didn’t wake up.
Doctors diagnosed Simon with sudden infant death syndrome (“SIDS”). They suggested Sudman and her husband, Darren, get their hearts checked.
“I’ve never had any symptoms,” says Sudman, “but I was diagnosed with Long QT, which is an arrhythmia.”
Sudman says the hereditary Long QT syndrome is likely what caused Simon’s death. So, after grieving, she co-founded Simon’s Fund.
“Our focus is all about sudden cardiac arrest in children,” she says. “We don’t want any other family to go through what we’ve gone through.”
Sudman says Long QT is the cause of about 15 percent of all SIDS deaths and is the number one cause of death among student athletes.
Simon’s Fund works to save lives by providing free heart screenings for kids, money for research, and education for parents and coaches about sudden cardiac arrest.
They’ve also passed Sudden Cardiac Prevention laws in two states and introduced legislation in six others.READ MORE: Double Shooting In Eastwick Kills 25-Year-Old Man, Wounds Pregnant Woman: Police
“Parents and kids who come to our screenings don’t think anything is wrong with them,” says Sudman, “but then they are diagnosed with a heart condition. Sometimes they are simply put on medicine. Other times they have to have open heart surgery.”
Symptoms of Long QT include fainting, palpitations, sudden cardiac arrest and death.
“Get your hearts checked,” says Sudman. “You get your eyes, ears checked every year. Our hope is that this becomes standard care.”
Simon’s Fund is holding a 5K fundraiser later this month.
For more on Simon’s Fund, go to www.simonsfund.org.
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