Ask any parent what is their worst fear, and the fear of outliving their child would undoubtedly rank No. 1. For Kevin and Anne LeMoyne of Milton, GA., their worst nightmare became their reality on Sept. 12, 2017.
On that day, the LeMoynes awoke to find their son, 14-year-old Matthew James LeMoyne, in full cardiac arrest. That sudden event was brought on by an undetected heart condition known as Long QT Syndrome (LQTS). The American Heart Association describes LQTS as an often genetic disorder of the heart’s electrical system that causes the heart to go into an irregular rhythm and can lead to cardiac arrest.
Long QT Syndrome is grouped with other genetic heart disorders known as Sudden Arrhythmia Death Syndromes (SADS), and the Sudden Arrhythmia Death Syndromes Foundation reports these disorders claim the lives of more than 4,000 youth each year in the United States.
Known by those within his circle as kindhearted, steadfast in his efforts, funny, respectful and polite, Matthew’s life ended abruptly, but left a lasting impression. Anne LeMoyne said her son was “all about family” and he had an infectious smile that would fill a room.
“Matthew was a kind person who made you feel better about yourself just by being around him,” she said. “He treated everyone with kindness and always made everyone feel included. He stuck up for his friends and those that struggled. He made them feel like they belonged.”
In the aftermath of Matthew’s death, the family learned that his mother and younger brother Nate also have the same genetic heart disorder. Anne said she does not dwell on her or Nate’s similar diagnosis, but admitted that initially, it was frightening.
“We were in shock and disbelief,” she said. “We were scared. We were angry. How can this be? How can we manage this? How do we prevent the same thing from happening to Nate that happened to Matthew?”
The family learned that neither his parents nor first responders could have saved Matthew with CPR alone.
“We were told by Nate’s cardiologist that we needed to get an AED (automated external defibrillator), however it might take a day or two,” she said. “We had already had some of the worst nights imaginable with the loss of Matthew, but to know that we didn’t have the tool in our hands that was necessary to save Nate’s life in the event that his heart stopped was terrifying. We did receive the AED in 24 hours, but it felt like an eternity.”
The fear and heartache of Matthew’s death, however, birthed new life and purpose in 2018, when the LeMoyne family established the Lovin’ Every Day Foundation. Their nonprofit organization honors Matthew’s gift for living every day to its fullest and works to provide resources, inspiration and support to families that live with a SADS diagnosis.
Through charitable donations, Lovin’ Every Day Foundation’s goal is to not only educate and empower families with a SADS diagnosis, but also deliver access to an AED and AED and CPR training. The Red Cross says that AEDs can save the life of someone during a cardiac arrest episode by delivering an electric shock or defibrillation that allows the heart to re-establish an effective rhythm. However, the cost of an AED can run between $1,500 and $2,000, according to the American Heart Association. Many families can’t afford this costly lifesaving device. Lovin’ Every Day Foundation hopes to change that.
Through the foundation, his family hopes that Matthew’s death will save lives, inspire, educate and empower other families living with heart conditions, advance much-needed research and bring resolve to those closest to him.
“We say all the time that we would have never had Nate or Kamryn (his sister) tested (for a heart disorder) initially,” Anne said. “We believe Matthew saved Nate’s life.”
Later this year, the foundation will host its inaugural fundraiser in Matthew’s memory to raise money to further Lovin’ Every Day’s efforts in helping other families living with SADS.
“[Matthew] would want nothing more than for us to help others who find themselves walking down a similar path,” his mother said. “Matthew would want to do everything possible to make a difference in the lives of individuals that are faced with struggle or complexity and bring a bit of positivity to it. Matthew had a beautiful smile, and I know he is looking down with his big bright beautiful smile.”