NORTH TUSTIN ? The twins took their first helicopter ride when they were young ? 1 day old.
Grace and Luke Chez, lying side-by-side in incubators, were whisked from the Orange County hospital where they were born to Children's Hospital Los Angeles for life-saving treatment.
Terra and Adam Chez are shown with their children Abbey, 2, and Luke, 7. Their children were born with a congenital heart defect (CHD) ? a third child Grace, Luke's twin, died of the condition at age three on January 9, 2008. Terra and Chez have founded a non-profit, Hopeful Hearts, to raise awareness about CHD.
LEONARD ORTIZ, THE ORANGE COUNTY REGISTER
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And so began a journey of fear, tragedy and, ultimately, hope.
Grace and Luke's parents, Terra and Adam Chez, would use another word to describe their seven-year saga:
Miraculous.
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"Hey, princess!"
Abigail Chez, 2?, has just woken from a nap. Her dad greets her as she walks into the kitchen of the Chez home in North Tustin.
With blonde hair, pale skin and blue eyes, Abbey bears a striking resemblance to her sister, "Gracie."
Abbey has something else in common with Gracie. Both children were born with congenital heart disease. So was Luke.
Three kids, all born with the No. 1 cause of infant death in the U.S. The odds of this happening are staggering.
So, too, are the challenges weathered by their parents.
Inspired to reach out to other parents of children with congenital heart disease (known often as CHD), Terra and Adam Chez started a nonprofit, Hopeful Hearts, to raise money and awareness for a condition that gets little public attention even though it affects 1 in 100 babies.
"We want to do something to make a difference for other families going through what we've been through," Adam Chez says.
Adam and Terra --- friends since age 10, married for 12 years --- want more people to know about CHD.
They also want people to know about Gracie.
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Because she was carrying twins, a potentially high-risk pregnancy, Terra, now 39, was subjected to particularly rigorous prenatal testing.
So the couple ? both healthy, with no history of congenital heart disease in their families --- got the diagnosis early, just 20 weeks into the pregnancy: Gracie and Luke had CHD.
The babies arrived on Feb. 9, 2005. Gracie was born with truncus arteriosus, a critical form of CHD. Luke was diagnosed with tetralogy of Fallot with pulmonary atresia --- the same as Abbey would be four years later. This, too, is a critical form of CHD.
Gracie had open-heart surgery when she was four days old. She almost died. Luke had his first surgery at five months.
Luke, now 7, later had a second open-heart surgery, and a third ? to replace a valve ? is coming soon. Abbey has had two surgeries.
Gracie eventually had four. She was the chatty, feisty twin to the quieter Luke. She loved to be around people rather than play with toys.
"She had a wisdom about her," says Adam, 36.
The end came suddenly, and unexpectedly.
On the evening of Jan. 8, 2008, Gracie was taken to the hospital with flu-like symptoms ?- just two days before a scheduled catheterization. One minute she was being treated for dehydration, and the next she coded and was fighting for her life.
The following morning Gracie died from complications of CHD. She'd been in the hospital about eight hours.
She passed away in her father's arms.
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Luke hops on a lounge chair next to his mother after bouncing on a trampoline in his backyard with his little sister.
Luke, a first-grader, loves baseball and other sports.
Looking at Luke, you see no hint of his medical challenges, though Luke helps clarify things by pulling up his shirt and showing off a thin, pale scar running down the center of his chest.
Luke does this as his parents are describing Hopeful Hearts. It's a foundation he knows something about.
"It's to help children who have special hearts," Luke says. "Like me."
Terra and Adam Chez launched Hopeful Hearts in April 2008.
They did so because they felt there weren't enough resources for parents and families going through the trauma of raising a baby with CHD. It's an ordeal that includes long days and nights in critical-care units. It's a life of anxiety, worry and deep lows; for many, it can be a life of pain.
For now, in-the-womb testing for CHD isn't routine. The non-profit's mission is to promote early detection. The organization also promotes valve research, and provides financial support to children and families living with the condition.
Congenital heart disease receives? 1 cent of every dollar? raised by the American Heart Association. And unlike many other common, life-threatening diseases, there is no dedicated, national organization aimed at fighting CHD.
In its first year, Adam says, Hopeful Hearts provided financial support to 30 families.
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After they lost Gracie, Terra and Adam were surprised to find that Terra was pregnant again, this time with Abbey.
"I didn't think I could do another girl," Terra says.
She and Adam also didn't think they could cope with another child with CHD.
But they did, and they are.
And their push to help others has grown. Over the last few years, Hopeful Hearts has expanded to provide financial support for around 75 families a year, says Adam, who owns care facilities for the developmentally disabled.
Through their nonprofit, the couple has donated $150,000 to outfit a critical care unit at Children's Hospital Los Angeles. They're also planning a gala, June 9, to raise more money for the cause. Their new goal: $200,000.
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Terra and Adam say their Christian faith has played a big role in getting them through the trauma of losing Gracie, and in coping with the medical issues their surviving children face.
They also say helping other families dealing with CHD is therapeutic.
"Time spent with the foundation is time spent with Gracie, and time spent in honor of Luke and Abbey,"?Terra says.
Terra watches Abbey run up to her.
In Abbey's face, and in her gleeful screams, Terra sees her departed child -- a girl they now call Angel Gracie.
"Honestly," she says, "giving back is healing for me."
Says Adam: "For me, the foundation keeps Gracie alive. She's still doing great things."
For more information on Hopeful Hearts and its gala on June 9, visit www.hopeful-hearts.org
714-704-3764 or ghardesty@ocregister.com
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