For Phyllis and Darren Sudman, there may never be complete closure from the loss of their son Simon seven and a half years ago.
Simon was just 14-weeks-old, eating and growing normally from his healthy seven-pound birth weight, when his parents put him down for a nap. But Simon never woke up.
Tests would show that Simon had a relatively unknown defect called Long QT Syndrome, a heart condition that can cause arrhythmias leading to sudden cardiac arrest. Doctors ordered tests for both parents, and a discovery was made: Phyllis suffered from the same condition.
In a way, that was the first person Simon may have ever saved. But it was only the beginning. Now students in Abington could also benefit.
"We decided we wanted to raise awareness about conditions that lead to sudden cardiac arrest," recalls Darren, who founded the Lafayette Hill-based non-profit Simon's Fund with his wife. "We started seven-and-a-half years ago, and provide heart screenings to children in the greater Philadelphia area and Ohio."
Simon's Fund works with schools and nearby hospitals to organize free screenings by medical staff. On its website, the organization uses a counter to keep track of all of the screenings provided to children. So far it reads: 4,748 hearts checked, 43 lives changed.
That's nearly one out of every hundred students diagnosed with a potentially life threatening condition.
Tragedy strikes Norristown community
Unfortunately, awareness about sudden cardiac arrest came too late for 16-year-old Akhir Frazier, a 6-foot-5-inch basketball standout who was likely to begin his junior year at Norristown Area High School in 2010 after transfering from Philadelphia's Prep Charter. But he never had a chance to play for the Eagles, as he passed away after collapsing on a Philadelphia basketball court that summer.
Once again, the tragedy represented a turning point, in more ways than one.
First, the Norristown School District worked with Simon's Fund to setup free screenings for several hundred students. A handful were eventually diagnosed with conditions, like 13-year-old Kyle McCabe, whose parents contributed a message on the Simon's Fund website.
"People tell us how sorry they are that Kyle cannot play certain sports or do some 'normal things,'" the message reads. "We don't look at it that way, we look at how fortunate we are to have a fund like Simon's Fund that saved our child's life."
Screenings were also provided at many nearby districts, such as Colonial, Abington, Lower Merion and Downingtown. As the number of diagnoses increased, so did the thank you messages on the Fund's website.
But the tragedy that struck the Norristown community proved to be the catalyst for something even greater. After seeing a nationwide push for precautions against concussions, the Sudmans decided to take their cause to the state legislature in Harrisburg. There they met with Representative Mike Vereb Vereb (R-150), whose constituency includes Norristown.
"We visited 12 lawmakers from around the state who had students die in their district," Darren Sudman says. "But when I presented [Rep. Vereb] with what was going on … he took the torch and ran with it."
Representative Vereb recalls how little convincing it took.
"With Darren and Phyllis, this was literally about saving lives and their own sacrifice," Vereb says. "I was hooked like a fish on a line -- they provided so much background detail and resources on how to get the word out."
Rep. Vereb introduced the Sudden Cardiac Arrest Prevention Act in the spring of 2011. The legislation, which aims to educate players and parents on heart conditions and prohibit at-risk athletes from play, zipped through both houses and landed on Governor Corbett's desk for signing in less than 14 months.
"In Pennsylvania there are 253 legislators and a governor; 251 voted for it," says Rep. Vereb. "The support was overwhelming through both the house and senate committee processes."
Rep. Vereb says experts like Phillies head athletic trainer Scott Sheridan and Dr. Victoria Vetter, a pediatric cardiologist at the Children's Hospital of Philadelphia, threw their support behind the bill. However, its biggest supporters were the Sudmans.
"Whenever we would become frustrated with the legislative process, they were there helping to push it through," says Vereb. "It was like 'wow, this family is still here, still pushing.'"
On Valentine's Day last winter, the Sudmans brought a number of children who had been diagnosed with conditions through Simon's Fund screenings to the Senate Education Committee.
"The kids delivered cards and cookies to make them aware that there were children just like them out there," says Sudman. "It's one of those days we'll never forget."
Looking to the future
The Sudden Cardiac Arrest Prevention Act officially went into effect on Monday, July 30. While it requires mandatory online training before any athlete takes part in PIAA activity and coaches to remove players who exhibit symptoms from play, the Sudmans still hope to raise awareness.
"We want parents to realize that there could be a heart problem, and look out for warning signs," says Sudman. "A primary sign is fainting during or right after exercise, and the unexplained death of anyone under the age of 50 in your family."
Sudman encourages parents to instruct their children to listen to their heart while exercising or during stressful situations, and not take the risk of assuming any problems are because of dehydration or exhaustion.
"When I grew up, Gatorade was the remedy for everything," Sudman says. "We don't want to be overly alarming, but we want parents to know the symptoms and warnings signs."
While the indisputable tally of lives potentially saved by Simon, and Akhir, currently sits at 43 students and a mother, there's no telling how many more will come in Pennsylvania. Or, for that matter, the nation. Representative Vereb has been invited onto a national Fox News broadcast in August to discuss the new laws and raise awareness for the cause.
It's just the ripple effect from one three-month-old boy and his dedicated parents.
"I think that all of us go into parenting blind, and we try to absorb as much information as we can and also learn as we go along," Sudman says. "My hope is that parents can learn from my experience."
To learn more about Simon's Fund, or sudden cardiac arrest and its symptoms, visit SimonsFund.org. The following information is from that website. In addition, click here to find out how to register for a screening.
• Fainting or Seizures
• Unexplained Shortness of Breath
• Chest Pains
• Extreme Fatigue
• Unusually Rapid Heart Rate
• Unexplained Family Death
3 Ways to Protect Your Child
- Make sure that your family doctor takes a complete medical history of your family.
- Attend a heart screening or ask your family doctor to give your child an ECG exam.
- Watch out for the symptoms and warning signs. If you see one, talk to your doctor and consult with a pediatric cardiologist.