Fund in Memory of Elijah and Chloe Allen

Elijah was the eldest of our three children, and our only son. He was an athletic boy, running around with some sort of ball in his hand for as long as he could hold one. Elijah was a fun loving joker with the most laid back temperament. He played basketball, baseball and football beginning at age four. When in third grade during P.E. Elijah fainted while running laps. He was taken to the emergency room for evaluation, and was cleared of having any problems. The doctors concluded that he collapsed from running in the heat. My intuition couldn’t accept their conclusion. My maternal aunt was diagnosed with Long QT Type 1 in the 90’s when they were just really discovering this condition, and didn’t really know much about it. I obtained copies of her genetic results so that I could press my child’s pediatrician for a referral to a pediatric cardiologist and ask for genetic testing. Our pediatrician obliged my request. Elijah and my daughter Kailey we’re both tested upon my request, and in 2010 they were found to have the same KCNQ1 mutation that my aunt had. I was diagnosed as the carrier as well. After extensive testing, treadmill test, holter monitors, zio patch and an echo. It was determined that Elijah and his sister were low risk, and the condition could be managed with beta blockers. Elijah was devastated by the diagnosis, because he was restricted from sports. Sports was his first love. We found other things that sparked his interest, but nothing ever touched him in the same way that sports did. He seemed to be responding well to the beta blockers, and had no other episodes. Until October 2013 in sixth grade, just eight days after welcoming his baby sister Chloe into the world, Elijah went into Sudden Cardiac Arrest at school while playing an unsupervised game of football. The school did not have an AED, there were no adults around and CPR was delayed. We lost our 11 year old son that day. All of the color left my world that day, and my heart shattered in places that I didn’t know existed.

Since we were aware of the condition, Chloe was tested and diagnosed at only two months old. She too had Long QT Type 1. She began taking the same beta that I had taken during my pregnancy with her. It was recommended by our electrophysiologist that I obtain an AED. Based on the results of my girls extensive testing, I was told that they also were not candidates for an ICD. I was told that Long QT Type 1 is usually mild, and that my son passed on because he was engaged in a rigorous restricted activity. My girls were restricted from sports and competitive swimming. I purchased two AED’s, one for each of my daughters. Kailey’s followed her to school, and the district was very accommodating developing a response plan for her. The girls saw an electrophysiologist quarterly at first, then our visits reduced to semiannually. All seemed well, and everyone was responding to treatment. We were rebuilding a life around the gaping whole in our family. Chloe was thriving and growing fast. She was a very mild mannered sweet child, a natural caregiver. Like the typical little sister, she wanted to do everything that her older sister did. Our family would refer to her as a little old lady, because she seemed like such an old soul. Chloe loved to sing, cuddle with mommy and she had the most contagious laugh. She loved playing dolls, video games (especially Mario Bros.), Roblox, and most of all she loved her family. Chloe also took ballet and tap dancing classes. I was just starting to see in color again. In May 2019 while attending a friends pool party, Chloe went into cardiac arrest. She had never exhibited any symptoms before, and was considered low risk. Since I was present CPR was initiated immediately. We deployed the AED immediately as well. However, when instructed by the 911 dispatch operator not to shock her, bystanders at the party wouldn’t initiate the much needed shock, and prevented me from shocking her as well. I felt helpless. At only five years old my daughter Chloe passed away with the AED that I always kept near, less than two feet away from her. We are beyond heartbroken yet again. More than anything I’m angry. The 911 operator’s lack of knowledge on Long QT Syndrome, and how to properly respond to a cardiac arrest, as well as the bystanders ignorance on AED’s were detrimental to my Chloe’s chances of survival. My only surviving child has since been fitted with an ICD, still not recommended by her doctors for type 1, but given the circumstances we can’t take any chances. After losing Elijah my family and I worked to donate AED’s to schools. My mission is now expanding beyond the schools. I am looking to raise awareness of Long QT Syndrome. Beta Blockers don’t always work. Sometimes for people that are asymptomatic the first symptom is Sudden Cardiac Arrest. The general public needs to be trained on CPR/AED. Families with diagnosed children need to have resources to obtain an AED, and keep it on hand just in case. That is the mission of the Elijah and Chloe Allen Foundation that we started to honor our children. Our goal is to prevent as many families from suffering the pain that our family now carries, by raising awareness, and offering resources. We have also been SADS Heart Sustainers for a few years as well. We humbly ask that you assist us in supporting the SADS Foundation in honor of Elijah and Chloe. SADS is an amazing organization that provides so many resources for families with Long QT Syndrome. If everyone does a little bit, then a little bit can go a long way. I miss my children every second of everyday. More than I can put into words for someone, unless you have experienced this yourself. Thank anyone that supports our mission with SADS in advance. We will love you forever Elijah and Chloe, beyond space and time.