The Other Side of Life

For five years, all of the celebrations in my life have been played against the backdrop of tragedy.   That doesn’t mean that all of the celebrations have been bad.  It just means that every celebration is somehow dampened by the loss of Simon.

Today, was an exception.  Today, I saw the other side of life.  I left my world and visited another world.  I got to attend Melissa Fair’s  bat mitzvah.  She looked amazing.  She sang and chanted beautifully.  She spoke with confidence and compassion.  She rose above the occasion.

Melissa attended a Simon’s Day heart screening two years ago.  The screening revealed a congenital heart defect that required open heart surgery.  As she put it today, “now, I’m better than ever.”

Melissa asked Phyllis and I to participate in her bat mitzvah celebration.  We had a part in the service.  We lit a candle at the reception.  We sat at a table with Lori and Ken (parents) and their siblings.  I realized very quickly that we were the only non-family member in the service and at the table.  Then, I realized that we were their family too.

We know that the activities of Simon’s Fund affect other people’s lives.  That’s our objective.  But, we don’t really know to what extent, and we don’t pause for too long to find out.  There’s more to do.

Today was a very long pause.  Today, I heard about how frightening and uncertain those days of surgery were for the family.  Today, I learned about how much of an effect the surgery had on Melissa’s life and character.  Today, I finally realized how much of an impact that Simon had on another life, and how appreciated he is by her family and friends.

I cried alot today. Typically, this amount of crying is reserved for anniversaries, birthdays, or missed milestones.  Today was different.  Today, I cried for the joy that Simon left behind, not for the sorrow of him leaving.  I cried over the happiness of what I was seeing, not over the despair of what I was missing.  I cried over the pride of knowing that Simon’s life touched someone else’s life, not over the agony of him losing his own life.

As Melissa called us up to light a candle today, she said in her poem that “we saved her life.”  Melissa, thank you, but the truth is, today your family changed mine.

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."