Whitney Jones – Simon’s Club Member of Week

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Any mother would gladly lay down her life for her child, which makes both the Jones’ and Sudman’s stories heartbreakingly ironic. Phyllis Sudman has long credited her child, Simon, with saving her life. Following his death, the family was instructed to get their hearts checked. Through this process, Phyllis was diagnosed with Long QT Syndrome, and a reason for Simon’s death was found. The Jones family credits the Sudmans and Simons Fund with saving both mom Rayna’s and daughter Whitney’s lives.

In May 2012, Whitney’s cheerleading coach signed her entire team up for Simon’s Fund’s free heart screening at Downingtown West High School. Before the screening, neither Whitney, a competitive cheerleader, nor Rayna, a former runner and swimmer, knew much about sudden cardiac arrest among students. They certainly had not heard of Long QT Syndrome, a hereditary heart condition particularly dangerous for athletes. Within a month, both would be diagnosed with the condition that killed Simon Sudman.

“We really admire how the Sudmans have given back to so many others by organizing Simon’s Fund to help others avoid the same tragedy faced by their family. For the rest of our lives, we will be thankful for their mission to help others. It is hard to find the words to express our heartfelt appreciation for what they have done for our family,” says Rayna Jones.

Rayna remembers sitting at the screening waiting … and waiting, as her daughter’s friends were being sent home, until the cardiologist came out and asked to speak with her privately. They’d found an anomaly on Whitney’s EKG and wanted to do an echocardiogram on site. The findings were not conclusive, but suggested Long QT Syndrome.

Getting a final diagnosis took the family almost a year of additional testing, because Whitney’s results were borderline. One test was particularly memorable. Whitney underwent a stress test at the Children’s Hospital of Philadelphia. Her heart reacted intensely to the test, and for the first time, the family became frightened. Yet the diagnosis was still not definitive, so the doctors suggested genetic testing. That’s where the Jones finally got their answers. Both Whitney and Rayna had the hereditary heart condition; Rayna’s was much more severe than her daughter’s.

The Joneses are grateful that their insurance covered this testing, allowing them to finally get the answer they needed.

Whitney is lucky; her sport of choice centers around a two and a half minute routine. Sports like soccer or basketball with sustained activity could prove too dangerous. Still Whitney’s doctor requires that an AED be available on the field whenever she practices or competes. Rayna is allowed to walk for exercise, as long as she stays hydrated.

“Whitney is such a special girl with a sunny, winning spirit” says her mother. “Although this diagnosis has been a heartbreaking experience for us, we are not going to let it rob us of a full life. We are focused on managing Whitney’s Long QT through medication, hydration, nutrition and avoiding the potential triggers. In the future, we hope to help others through our story and we will be life long supporters of Simon’s Fund to help others benefit from the testing that helped our family.”