PHILADELPHIA (CBS) – Dave Huddleston tells us how a New Jersey man is helping his sister, who lost her child to a congenital heart defect.

It’s playtime at Jim Aprino’s house, precious moments for any parent. But Jim says he wishes he would have had the chance do this with his nephew, Zach.

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“Never a chance to buy a Christmas present, never a chance for a birthday,” said Aprino.

Zach was Krissy Shafer’s first child. He was born with CHD (or congenital heart defect) in 2008.

Zach had multiple surgeries before he could even roll over. Zach “had his first open heart surgery at a week old, had a cardiac cath at two weeks old, and had a pacemaker put in a two and a half weeks old,” said his mother.

Krissy says after Zach came home, she and her husband tried to make every day special, marking milestones in his baby book. They wouldn’t be able to complete that book. On December 9, 2008, nine months after he was born, Zach passed away.

“I walk out of my bedroom and my son’s room is right there and he’s not,” said Krissy. “We never got to have a first Christmas with him. We never got to have a first birthday with him.”

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While mourning Zach’s death, Krissy and her brother Jim founded the CHD Coalition. They have raised tens of thousands of dollars to help children with CHD.

“It’s fulfilling for me, and that’s how we keep his memory alive,” said Jim.

This month, they will hold their third fundraiser, Zach’s Tracks, at the Philadelphia Zoo. The money will go to St. Christopher’s Hospital.

Krissy says it’s her way of helping others while she mourns Zach’s death.

“Knowing that I’ve helped a child or helped a family makes it a little easier,” she said.

This Saturday, October 8, 2011, at 8:00 a.m., the CHD Coalition will hold their fundraiser, Zach’s Tracks For The Heart, at the Philadelphia Zoo.

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The CHD Coalition