By:LARRY MAIER
Merrick Woman of Distinction fights to find a cure to children's heart disease
Sixteen years ago, Susan Helsinger made a decision to live. She'll tell you it was a selfish choice, a way for her to cope with every mother's worst nightmare, the sudden loss of a child.
By all accounts, Helsinger's son Jason Gruen was an exceptional boy. He was 15, a Manhasset High School sophomore and an honor student already being wooed by Princeton University.
He had lots of good friends, was a pretty fair wrestler, loved to ski and was a dispatcher for Students Against Drunk Driving..
Jason had the world at his feet. And then, in the blink of an eye, on April 16, 1985, he was gone, a victim of a not-so-rare heart disease called idiopathic hypertrophic subaortic stenosis and cardiomyopathy. He was walking to his first-period class when he died suddenly. School officials called Helsinger at home and told her that Jason was having difficulty breathing and that she should meet her son at the hospital.
"As soon as I walked into the hospital, people started saying, 'there's the mother, there's the mother,'" said Helsinger. "I knew then that something was very wrong."
Seven weeks after burying her only child at the time, Helsinger's first husband left her, telling her she reminded him too much of their son. It was almost too much to bear. "One day I woke up and I was all alone. I had to decide whether to live or die."
Helsinger chose life, saving her own and giving meaning to Jason's.
As a way of remembering her son and fighting to spare other mothers the overwhelming heartache she felt, Helsinger started the Jason F. Gruen Research Foundation, a charitable organization that funds research in the field of pediatric cardiology.
The foundation gave her a reason to wake up in the morning.
"To live meant I had to have a purpose in my life," said Helsinger, who now serves as the charity's executive director. "This was something I had to do, for Jason and for me."
Most of Helsinger's efforts with the foundation consist of hours spent toiling in the background. But she was front and center on June 5, at the Legislative Office Building in Albany. There she was honored by Sen. Charles Fuschillo (R-Merrick) as a 2001 Woman of Distinction.
Picking Helsinger was an easy choice, Fuschillo said.
"The award recognizes women who have contributed greatly to the betterment of their community. I've known Susan for several years. She is a very charitable and giving woman and certainly exemplifies the true meaning of a woman of distinction," the senator said.
Helsinger's photograph and biography, along with those of other Women of Distinction, is on display at the Merrick Public Library through Sunday, Aug. 12.
The award is a great tribute, Helsinger said; not just to her, but to the entire foundation and everyone involved with it. "The honor brings Jason's memory into a much broader scope, which is a great compliment to him," she said. "More people will know about him and be able to share his memory."
SH: Raising money to find a cure
Past fundraising efforts have contributed to the construction of a research center at Deborah Hospital in Brownsville, N.J.
In 1997, the Jason foundation helped build the 4-story Heart Center at Babies Hospital, part of the Columbia-Presbyterian Medical Center in New York City.
Just recently, Fuschillo secured a $100,000 grant for the foundation that will be used to purchase a portable monitoring system for Schneider's Children's Hospital in New Hyde Park. The system will allow children who have had open-heart surgery to move freely throughout the hospital, instead of being confined to beds.
Now, Helsinger is working with local school boards to try to get echocardiograms administered to 7th-grade students. She can't help but feel that if Jason's condition had been diagnosed earlier, instead of at 14, he might still be alive today, a 31-year-old man making his mom proud.
"He always wanted to be an optical physicist," Helsinger said, laughing as she imagineds what Jason might be doing with his life today. She thinks her "computer whiz" son might have gone in a different direction, however. "I would see him being Bill Gates' partner or something like that."
SH: Life after Jason
Helsinger said her life is now full. She has been married to Jay Helsinger for 15 years. The couple has a handsome, 9-year-old son, Connor, and owns Custom South Shore Real Estate in Merrick and Custom Wise Real Estate in Long Beach.
She and Jay are involved members of the Merrick Kiwanis Club. Helsinger chairs the club's Holiday Gift Wrap at Roosevelt Field. The yearly fundraiser has brought in over $100,000 in the last four years, a portion of which has been donated to the Jason foundation.
With the help of the Jason foundation, much has been learned about pediatric heart disease, but critical information about IHSS and cardiomyopathy still evades researchers.
"We still can't determine which children are most at risk of sudden death," Helsinger said. With more funding and research, better medications and surgical techniques can be developed, she said. Lives can be spared and broken hearts avoided.
Though her first son is gone, Helsinger said she can sense Jason's presence when she meets the mothers and fathers of sick children through her work with the foundation. "I feel Jason when I go to the hospital and a parent comes over and says 'thank you' because their child is alive," Helsinger said.
And, she can see Jason in the faces of the young lives the foundation is helping to save. The only thanks she asks from them is that they remember her son.
"I tell them to do one thing nice in their life," Helsinger said. "And dedicate it to Jason."
IN SHADED BOX ????
If you would like to make a contribution to help fight IHSS, cardiomyopathy and other pediatric heart diseases, send a check to: the Jason F. Gruen Research Foundation, c/o Susan Helsinger, 3145 Camden Lane, Merrick 11566. Contributions are tax-deductible.
