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live football games:Simon's Heart hosts 9th annual Simon Says fundraiser for awareness of cardiac death in children

Cedarbrook Golf Club hots 9th annual Simon Says for Simon's Heart organization
Cedarbrook Golf Club hots 9th annual Simon Says for Simon's Heart organization 02:03

PHILADELPHIA (CBS) -- A big crowd turned out on Monday to remember a little boy. Golfers helped raise money to promote awareness and prevent cardiac death in children.

Baby Simon Sudman was born on October 21, 2004. His mother Phyllis remembers the first time she saw him smile.

"There's simply no words. It's simply amazing," she said.

She remembers what happened less than two months later.

"I put down Simon for his nap, and he never woke up," Phyllis said. "Thankfully to our coroner and pediatrician, at that time they both recommended my husband and I both get our hearts checked. I was diagnosed with a heart condition, Long QT syndrome," Phyllis said.

CBS News Philadelphia.

The condition causes her heart to lose rhythm but medication helps her heart maintain its rhythm.

She was at Cedarbrook Golf Club Monday, for the ninth annual Simon Says, a fundraiser for the organization Simon's Heart which offers free cardiac screenings for kids and AEDs for communities.

Simon's father Darren says the group also offers trainings with their CPR jukebox.

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"You can do that. You are knowledgeable enough and confident enough to jump in and do it for real if you have to," he said.

Simon's sister Sally, now 20, was only two when Simon was born.

"I hope that people learn to get their hearts checked and that people of a young age should go to these heart screenings," Sally said.

Sixteen-year-old Jaden never met his brother Simon but he says a little knowledge can help other families avoid heartbreak.

"I don't think parents know how serious this is," Jaden said.

The family says Simon, who would have been 18 this year, lives on in their hearts and others.

"I get to remember kids who got their hearts screened and found conditions and are now living healthier lives," Darren said.

There was much more than golf on the schedule. The group planned pickleball, BBQ, and music for the rest of the day.

Organizers hoped to raise $75,000 for screenings and trainings.

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