Simon Sudman was a smiling, cuddly baby, seemingly the picture of health after his birth in 2005.
Then, suddenly, just after he turned 3 months old, that smile stopped.
"It was one night, we put him down for a nap - it was right in this room - and he didn't wake up," says father Darren Sudman.
Phyllis Sudman, his mother, "We were not prepared at all. No parent is ever prepared."
Simon had an undiagnosed electrical defect of his heart called Long Q-T Syndrome.
It can lead to sudden cardiac arrest.
After her own heart was checked, Phyllis learned she also had Long Q-T syndrome.
She's never had any signs of trouble, but now takes a beta blocker drug every day as protection.
Since Simon's death, the couple has also spear-headed a drive to screen children for Long Q-T, and other silent heart defects.
Over the past 6 years, 37-hundred kids have received electrocardiograms through Simon's Fund.
Darren says, "We know that for every 100 kids we check, one of them is going to have a heart condition that could result in sudden cardiac arrest."
They are also lobbying to get a law in Pennsylvania to keep young athletes showing potential signs of heart trouble, such as fainting or shortness of breath -out of competition until they are medically cleared.
The Sudmans say the screenings can save lives.
"You get your eyes and ears checked. Your heart is such a critical organ in everyone's body, that it should get checked," says Phyllis.
Sudden death from Long Q-T syndrome is rare. It is genetic, but typically symptoms show up between the ages of 10 and 19. So the foundation is focusing on that age range.
Symptoms include fainting spells, unexplained seizures, and rapid, erratic heartbeats. However, sometimes there are no symptoms.
But if anyone in your family has Q-T syndrome, you should also be tested with an EKG.
