The Bill Signing – Our Remarks

I need to begin by saying thank you to Jennaphr Frederick, Josh Weisman, Brian Kadunc and Representative Mike Vereb.  The universe brought all of us together on April 14, 2011, and as a result, we are here today making a huge difference in the lives students.

Representative Vereb, a big thanks to you (and your staff) for your tireless efforts.  We did not realize the champion we were getting that day we met in your office.  Governor Corbett, thank you for your leadership and support on this issue. With your pen stroke here today, you will save the lives of children.

A good friend of ours always says that we are members of a club that no one wants to join.  Phyllis and I became members of that club on January 24, 2005, when our three month old son, Simon, died.  There are other club members here today – the Rodgers Family, the Silva Family and the Frazier family.  It was Akhir Frazier’s story that brought me to Representative Vereb’s office.

Like in all clubs, the members get to decide what they want to get out of it.  Our choice was simple.  We wanted to make sure that we were the last members of this club.  We don’t want you to join. We want your kids to be safer.  This bill is a manifestation of our choice.

We believe that there are three approaches to tackling sudden cardiac arrest and death in children. These approaches are not mutually exclusive.  They work together, in concert.

The first approach is DETECTION.  We need to discover these conditions before they hurt our children.  Simon’s Fund works with schools and organizations to provide free heart screenings.  To date, we’ve checked almost 4,000 hearts and helped at least 38 students discover potentially life threatening heart conditions.  Some of those students are sitting here today.

This weekend, we’ll be at the Liacouris Center with the Athlete Health Organization to provide free sports physicals for over 1,000 high school students in Philly.   Every student will receive an ECG exam.

The second approach is REACTION; how do we respond when a child collapses.  By having AED devices spread throughout our communities, and a population that knows how to perform CPR, we will save lives when sudden cardiac arrest strikes.

The third approach is EDUCATION. The Sudden Cardiac Arrest Prevention Act accomplishes this.  Representative Mike Vereb summed it up best – he said that sudden cardiac arrest is now a household term.  Parents will now be AWARE that sudden cardiac arrest kills at least 2,000 students every year and they’ll guard against it.

Coaches will now be AWARE that fainting is not acceptable and Gatorade is not the remedy.  As a State, we will take these symptoms seriously and do a better job of protecting our children.

This is a tremendous step forward in our quest to save young lives.  We are so proud to be a part of it.

I’d like to close on a personal note.  Phyllis and I cherish this moment.  Simon would have been in first grade this year, positioned nicely in between our daughter, Sally and our son, Jaden.   We are so happy that they are here with us today.

We’re never going to get to go to Simon’s soccer games, choir concerts or graduations. Our moments with him are limited. This bill signing is one of those moments.  This is our ceremony for him.

Finally, I want to share a phrase from one of our favorite songs.

You’ll be with me; Like a handprint on my heart. And now whatever way our stories end; I know you have re-written mine

This legislation will be the handprint of Simon and Representative Mike Vereb on the hearts of children throughout Pennsylvania.

Protecting Hearts. Saving Lives.

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Protecting Hearts. Saving Lives.

Powered by Hopeworks Technology Solutions

Jake Berman

“I attended a heart screening at Colonial Middle School when I was ten. I was in the marching band and liked to hike and rock climb. I was diagnosed with Wolff Parkinson White Syndrome. After my procedure, I kept doing the same things.”

Whitney Jones

Whitney’s commitment to heart health advocacy began at 10 years old when she and her mother, Rayna, were diagnosed with Long QT Syndrome during a Simon’s Heart screening at Downingtown West High School. Despite the diagnosis, Whitney pursued her passion for cheerleading and continued to thrive in the sport through her college years at St. Joseph’s University. After graduating, Whitney joined Stryker Instruments as the Senior Specialist for Off-Site Meeting and Events, where she skillfully orchestrates events that promote health and medical innovation. Further extending her impact, Whitney is an active member of the Simon’s Heart Young Professionals Committee, while her mother Rayna contributes her expertise on the Board of Directors.

Katie Asper

“I attended a heart screening at Upper Dublin High School when I was ten. I played soccer. I was diagnosed with Wolff Parkinson White Syndrome and had an ablation to fix the problem. I attend Temple University.”

Matthew Green

“I attended a heart screening in Mason, Ohio, when I was ten. I participated in baseball, basketball, and diving. I was diagnosed with an atrial septal defect. I had surgery to repair the hole and started wearing a protective shirt during activity. I am graduating from Miami University.”

Valerie Krawitz

“I attended a heart screening at Colonial Middle School when I was ten. I played baseball, soccer, and track. I was diagnosed with Long QT Syndrome and an atrial septal defect. I had heart surgery to repair the hole and I take medicine for the Long QT. I can’t play competitive sports like I once did, but found other activities. Next year, I’m attending Penn State University.”

Drew Harrington

“I attended a heart screening at Radnor High School when I was ten. I played lacrosse, tennis, and basketball. I was diagnosed with Wolff Parkinson White Syndrome. I used to feel my heart beat really fast, but just assumed it was fine. Coincidentally, on Simon’s 7th birthday, I had a procedure called an ablation. Today, my heart is fine and I attend the University of Richmond.”

Alaysia Keeley

“I attended a heart screening at Norristown High School when I was ten. I played softball and enjoyed going to the mall with my friends. I was diagnosed with Long QT Syndrome. I had to stop playing sports and drinking soda. Now, I take medication and live a normal life.”

Kyle McCabe

“I attended a heart screening at Norristown High School when I was ten. I played baseball, basketball, and football. I was diagnosed with Long QT Syndrome. I stopped playing sports to protect my heart, but I still manage to have fun.”

Melissa Fair

“I attended a heart screening at Colonial Middle School when I was ten. I loved dancing and hanging out with my friends. I was diagnosed with Partial Anomolous Pulmonary Venous Return and Atrial Septal Defect. The doctor told me that my life would have been cut short if I hadn’t found out. I’m graduating from Penn State University this year.”

Zach Steffens

“I attended a heart screening at Stillman Elementary School in Tenafly, N.J., when I was fourteen years old. I love running, Tae Kwon Do, and Armenian cultural dancing. I was diagnosed with a rare congenital defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). I had open-heart surgery and recovered well. One month later, I suffered a cardiac arrest and an automated external defibrillator (AED) saved my life. I now have an implantable cardioverter defibrillator (ICD) and am healthier than ever. I will be attending The College of New Jersey and majoring in biomedical engineering.”

Annie FitzPatrick

“I went into sudden cardiac arrest at a local convenience store when I was 19 years old. My heart stopped and the only reason I am alive today is because an AED was readily available. I was diagnosed with Long QT Syndrome shortly after and was introduced to Darren and Phyllis with Simon’s Heart. I have been an active volunteer ever since. I went on to graduate Cum Laude from Drexel University with a double major in Business Analytics and Marketing and now work at a leading chemical company.”

Maeve Quinn

"I had a sudden cardiac arrest during softball tryouts at my high school. I was 15 years old. Thanks to the quick thinking of my coach and athletic trainer, they started doing CPR and using an AED immediately. This helped save my life. I had an implantable defibrillator surgically placed in case this happens again. I volunteer to educate people on the importance of screenings, learning CPR and the use of AEDs. Anyone can save a life like mine! I am planning on going to college for nursing."