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From the Heart
And the more time that goes by, the more his parents become determined to prevent sudden cardiac arrest among children, which ended their son's short life without warning.
Simon's Fund -- the charity they created in his memory -- has until now provided some 1,600 free heart screenings to children around the Philadelphia area. Until recently, it was run entirely by volunteers, but the family has taken on a full-time manager in order to ramp up the number of screenings, as well as educational projects.
And they are becoming even busier as they prepare for their annual fundraiser, "Simon's Day," slated to take place on May 2.
"We felt like it was time for Simon's Fund to do more," Darren Sudman, Simon's father, said in a recent interview.
For parents, it's important to know about these medical conditions, he explained, so that what happened to them won't happen to another family.
At the time of his death, Simon showed no signs of illness. Just shy of 7 pounds at birth, his Apgar scores -- a test that determines the health of a newborn -- were healthy numbers, and he had a voracious appetite.
But on Jan. 24, 2005, he underwent sudden cardiac arrest during what his parents thought was just a routine nap.
The doctors determined that it was Sudden Infant Death Syndrome, but after the family performed significant testing, they determined that their baby most probably died of Long QT Syndrome, a rare inborn heart condition. His mother, Phyllis, 38, happens to have the same condition, but it was diagnosed only after Simon's death.
After Simon died, Darren and Phyllis -- who have two other children -- decided to create a charity in his memory.
Darren, 39, who has been involved in a number of community-service projects, including those with the Jewish Federation of Greater Philadelphia, said that dedicating themselves to heart awareness among children "made sense."
The fund, which has provided free screenings to Colonial, Exeter and Abington school districts, among others, covers the $50 cost required for the necessary tests. It has also pledged $250,000 toward a national heart-screening study at the Children's Hospital of Philadelphia, and has sponsored 10 medical fellows at CHOP.
In addition, the Simon Fund has launched a program, to start later this year, to provide echocardiogram exams to all newborn children served by the Corrine Santerian Newborn Center at Abington Memorial Hospital.
"Heart conditions are easy to detect and relatively inexpensive to perform," said Darren.
So far, a number of parents have discovered heart conditions that had been previously undiagnosed in their children. Two of the girls screened belong to the Sudmans' synagogue, Or Ami Congregation in Lafayette Hill, and have subsequently undergone surgery.
The fundraiser -- which will include magicians, comedians and music for kids -- will be held at the Ambler Theater.
Time Well Spent
For Darren Sudman -- a lawyer by training who recently became a teacher -- the long hours he has put into raising awareness about heart screenings have been more than just therapeutic: "I think of all the time I spend on the fund as time I would have spent with Simon."
"I'm constantly amazed," he continued, "by how much Simon's life has changed the world in the 96 days he was here. I look around at the community and see people who have been here for 30, 50, 60 years and haven't done much. But my little boy, who I never got to know, has made such a difference."
For more information, see: www.simonsfund.org.