The most meaningful impact many of us can have on someone else’s life will come from sharing our deepest pain. Sharing our pain is not always easy. It hurts. It can be awkward. Yet it can also provide meaning and purpose. Ask Phyllis and Darren Sudman. By sharing their pain, they have helped to save the lives of many other people.
It is an inspiring story, one which started nearly a decade ago.
In late 2004, Phyllis and Darren’s son Simon Sudman was born. He weighed six pounds, 15 ounces at birth, and by all signs was healthy and normal. At seven weeks, Simon smiled for the first time. 47 days later he died.
What no one knew at the time was that Simon’s tiny little heart had an unknown defect called Long QT Syndrome, which can result in sudden cardiac arrest. Phyllis and Darren had never heard of the defect. Before long, they found out that Phyllis also had the condition, and that this heart arrhythmia was responsible for up to 15% of all Sudden Infant Deaths (SIDs). Through the trauma and pain of Simon’s death, Phyllis and Darren began educating themselves about sudden cardiac arrest.
They learned that Simon was one of thousands of kids to die of sudden cardiac arrest in 2005. Many of those who died were babies, while many others were high school athletes.
“Sudden cardiac arrest is the #1 cause of death of student athletes,” Darren told me. “It is not just an adult thing.”
Darren’s words made me shudder. I felt for him. At the same time, I appreciated his willingness to share his pain. By doing so, Darren allowed me in to his story in a way that made what he was saying more personal and meaningful. Right away, I could see how Phyllis and Darren’s decision to “share their pain” had been so helpful to others.
In memory of their son, the two established Simon’s Fund. The mission of the organization is to save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death. Simon’s Fund raises money to provide free heart screenings to children. It also sponsors medical research projects, hosts awareness events, works with major medical institutions and promotes legislation dealing with sudden cardiac arrest. As a result of Simon’s Fund, dozens of students have discovered unknown, potentially-fatal heart conditions.
“All of the conditions are detectable and treatable,” Darren told me. “Yet it takes the lives of thousands of students every year. Have your family tested and help us spread the word,” he continued.
It is good advice.
Simon’s Fund works with many organizations across the country to raise awareness about sudden cardiac arrest, and creates ways for families to be tested. Of course, as I learned while talking to Darren, this really is an issue of awareness – which is something we can all embrace.
“Anyone can raise awareness,” he said. “It’s easy to make a difference. We don’t need to raise hundreds of millions of dollars for research. We just need to make people aware,” Darren continued. “They’ll do the rest from there!”
That is where we come in to play. As I took in their story, I couldn’t help but think about the many young people Pam and I are blessed to have in our lives. If you are a parent or have influence in a young person’s life, I would encourage you to get them tested. For more information on Simon’s Fund and/or sudden cardiac arrest, feel free to click on the link below. And to everyone who helps make Simon’s Fund such a life-giving organization, THANK YOU.
And finally, to Phyllis and Darren, thank you for sharing your pain with the rest of us. I heard once that God does not waste a single tear, and your story reinforces that belief in me. You two and your family inspire the rest of us. Please let us know if we can ever do anything to help.
The link to Simon’s Fund is here – http://www.simonsfund.org