One year and five months ago, our family experienced a tragic and life-altering loss. On September 12, 2017, we awoke to panic and chaos as our 14-year-old son, Matthew, lay in his bed in full cardiac arrest. Even with the heroic efforts of his family, first responders, and hospital staff, we lost him that morning. Unimaginable, unexplained, heartbreaking! Seventeen months later we find ourselves on a journey that even today seems unreal.
The Lovin’ Every Day Foundation, founded on October 4th, 2018, has a simple mission; to inspire families with heart conditions by empowering them with the knowledge and resources needed to live an enriched today and brighter tomorrow. Our focus is simply to raise awareness and financial resources to help families in need to secure the knowledge and resources needed to safeguard a loved one with a cardiac condition. As you will learn below, Automated External Defibrillators or AEDs now hold a permanent and protectionary place in our hearts. To better understand why you may consider joining us in this work, it may help to learn how we got here.
There is no proper way to describe the despair that follows the death of your child. Unfortunately, there are too many parents like us that know all too well what this loss does to you as a parent and person. It’s really unfair to try to describe it. It cuts too deep for even the imagination. Anne and I used to hear stories of families who lost a child. We would certainly always give pause to the possibility of such a loss. But the truth is, your mind will not allow for you to go to the depths that the actual loss takes you. Family, community, and friends help pick you up when you are down, but the hard work comes in the silent hours. It's in those hours that you're left searching for answers that will never come. At least not here on earth. In the weeks and months that followed, we would learn about the condition that took the life of our 14-year-old son. Unfortunately, we would learn of it through the diagnosis of LQT in Matthew’s twelve-year-old brother, Nate, followed by a diagnosis of his mom, Anne.
GENUINE IN INTENT AND PURPOSE
Matthew lived a wonderful life, genuine in intent and purpose. He was truly someone that would make you feel better about yourself. His kindness was his greatest attribute. We can’t tell you the number of times we have heard this over the past seventeen months. Random people, as well as friends and acquaintances alike, all say the same thing. He was just simply a great person to have in your life. One of his classmates told us that he always liked Matthew because even though he wasn’t one of the “popular” kids, Matthew would always say hi to him and talk to him. Another one told us that she could always count on Matthew saying nice things to her to lift her spirits on a bad day. One of Matthew’s teachers wrote us recently and said, “He was always smiling, happy and had such a genuine spirit.” She followed with, “it was so apparent by his demeanor that he was surrounded by love.” It is so heartening to hear all those that crossed paths with him got to see what we, as his family, saw every day.
Matthew worked hard at what was important to him. He had ambitious goals, of which he held himself accountable for achieving. He wasn’t afraid to fail, but at the same time made sure he put in the work to better his odds at success. Perseverance and resilience served him well. A quick story on that. Matthew played baseball, a lot of baseball! He watched Nate take up a different sport in lacrosse, and he started to grow a liking to the sport. In Matthew’s mind, he questioned if he was too old to start playing it. Catch that? Too old at the age of 14! He spent the summer before his freshman year, working on picking up this new game. He was maniacally focused on increasing his chances of success as he learned the game. Every day accountability - literally! On September 10th, 2017, just two days before he died, he played his first and only high school lacrosse game, a scrimmage in the fall season. We had never such seen joy and pride in his eyes, like we did that day, as he came across the field after the game. Below is a picture of Matthew following the game with his buddy, Cole. What was always great about him was the fact that he didn’t even really realize that it was his character and drive that fostered his successes. He was a creature of habit. Great habits!
To this day, on his bathroom mirror, is a quote he wrote as a reminder to himself. It reads, ”Is your will greater than your skill?” We have not mustered up the strength to clean that mirror. It embodies everything that Matthew was here on earth.
As time has passed, we have learned too, what a force he was on our family. Shortly after his death, in a conversation with one of his best friends, he told us how much Matthew loved his family. He said they used to make plans to hang out, go fishin’, head to Bass Pro Shop, whatever. He said often times Matthew would politely decline, only to follow it up with, “I’m hangin’ with the fam today.” We fondly remember how Matthew would often choose us. Even as he reached his teenage years, his preference often was to be home. Below is a picture of Matt and the fam on the way to a Browns game in Atlanta, GA. That smile was ALWAYS there!
Seeing Kamryn and Nate adjust to life without him has been heartbreaking to watch, and at the same time, a lesson in perseverance. His presence and now absence has and will always, have a huge effect on our family. Our equilibrium is off. The loss of Matthew has changed all of us as individuals, but so to as a family. We are having to relearn some things without him. Matthew always had a way to calm the chaos that comes in a family of five. You all know what we’re talking about. There’s always something brewing in a large family, or any family really. We sure could have used and benefited from his counsel over this past year.
Finally, Matthew had a great sense of humor. At his service, a dear friend of our family spoke of both the school-time Matthew and summer-time Matthew. The former was a good student. Courteous and measured. Polite and respectful. Always on time! The latter was ready to let loose. Funny, energetic, passionate with his hobbies and always up for the next adventure! It was a perfect description of what we all had come to know and love. We could always count on him to bring a little levity to the situation. Below is a picture he sent while preparing dinner one night. He didn't make dinner much, but he sure did make us laugh often! It's a lesson in life that we could all benefit from. His sister, Kamryn has some great video of summer-time Matthew. If you run into her, ask to see some of it. It will surely make you smile!
We could go on and on about who Matthew was as a person. Perhaps the best way to properly close it out is by sharing the values of the Lovin’ Every Day Foundation. As we began to put the foundation together, these seven words jumped out at us. There is no better representation of the person Matthew was!
Kindness, Integrity, Transparency, Ambition, Accountability, Perseverance, Resiliency
If you choose to join us on this journey, we commit to follow the lead that Matthew provided us.
LONG QT SYNDROME, OUR DISCOVERED TRUTH
One month into grieving the loss of Matthew, we learned that Nate had a heart arrhythmia. Unknown to us at the time, as was the case for Matthew, we discovered our family likely has a genetic heart disorder called Long QT Syndrome. We are hopeful that genetic testing over time will confirm our diagnosis, or lead us down a different road.
Long QT Syndrome, our discovered truth, can sometimes, and in some people, trigger dangerous heart arrhythmias. It is essentially an electrical issue in your heart, that can cause victims to faint, have seizures, or enter into sudden cardiac arrest. Often times, the only thing that will get your heart functioning properly again is the combination of well performed CPR and proper use of an AED. In our case, we had no idea what happened with Matthew. He died quietly in his sleep on the morning of September 12th. No symptom other than Sudden Cardiac Death ever presented itself. Although we administered CPR in an effort to save his life, we needed what we now have in our home, an AED.
For us, there have been many sleepless nights that are a part of the grief process. But there was another simple truth. As we come to grips with the loss of one child, we must protect against the worst this disease can deliver, with both Nate and Anne, as well. The night that Nate was clinically diagnosed was perhaps one of the worst nights of our lives. We really didn’t understand what LQTS was. It was that day we learned, LQTS was likely the cause of our eldest son’s death, and we needed an AED in the house in the event Nate, our youngest child, were to become symptomatic.
BLESSED TO HAVE THE MEANS
And so we come to the “why” behind Lovin’ Every Day Foundation. For us, we needed an AED, so we bought it. One thousand dollars, out of pocket, right now! Truthfully, we would have paid any sum, to protect Nate and later as we learned, Anne. As time has passed, we started to ask different questions. What do families that can’t afford and/or don’t have insurance to help pay for it, do? What if their son or daughter, husband or wife, was diagnosed with the same or different cardiac condition? What if CPR alone wasn’t enough to save your loved one? What if you needed, but had no access to, a life-saving device like an AED to save their life?
Then we asked, what if we could help educate coaches, parents, babysitters, teammates, and coworkers on how to actively participate in a life-saving response like quality, effective CPR and AED administration.
What if you turned the corner, as we did on September 12th, 2017, to find a precious loved one in need of life-saving cardiac intervention? Would you know what to do?
What if medical science had intersected with Matthew before his heart failed? It's not that far off...
We are blessed to have the means to help people who experience what we did, and to for those whose experience is yet to come. We intend to do exactly that, in loving memory of our dear son and brother, Matthew James LeMoyne.
Will you join us? Please consider us in your giving plan by providing a one-time donation or better yet a recurring pledge to support Lovin’ Every Day Foundation. Hit the "donate online" button on our website.
We wish all of you continued strength, love, and goodwill in 2019 and beyond. We truly hope and pray that you live to love every day! Just as Matthew did.
With humble and grateful hearts,
Anne, Kevin, Kamryn and Nate LeMoyne