WE RUN FOR THE CAUSE
6Devon was 10 years old when he collapsed at school in 2012. The doctor assumed he was dehydrated but asked us if we wanted to do further testing to rule things out. A few days later we took him to Children's Mercy for an EKG. We were notified immediately that he had an abnormal EKG and would need to come back for more test and avoid all physical activity. We went back to Children's and were shocked by the news we received. Devon was diagnosed with a SADS (sudden arrhythmia death syndrome) condition called Long QT. His doctor told us he was at high risk of cardiac arrest. She said he was lucky to be alive and that he could no longer live an active life and couldn't be left alone for more than a few minutes at a time. We were so scared and Devon was devastated. I did a lot of research in the first few weeks and found out that his condition was not rare and that he was indeed lucky to be alive because most of the time the first warning sign is death. I learned that nearly 4,000 young people die each year from conditions like Devon's. It is 3 to 4 times more common than childhood leukemia. But after reading more about it we also realized not very many people knew about it, so with help from my closest friends and family we decided to host an awareness fundraiser in honor of our son Devon. In less than 5 months we had our first annual Devon's Beat 5k. I continued to research SADS conditions and learned that most conditions were not only detectable with proper testing but very treatable. My next mission was to find a way to test kids for such conditions in hopes to catch very treatable conditions from claiming yet another young life. While researching this i found that there are lots of foundations over the US doing exactly what i wanted to do. They were screening young hearts and finding one in one hundred at risk for cardiac arrest. So in October 2014 we had our very first Devon's Beat Heart Screening! We are coming up on our 6th annual 5k and 4th annual dance and auction. We have rasied over $50,000 and screened over 350 kids. Devon had an ICD (implantable cardio defibrillator) implanted in his chest 7 months after he was diagnosed because he was at a very high risk of cardiac arrest.
Fast forward to July 2015 when Devon got sick and his appendix ruptured. Had we not known about his condition they would not have known what medicines they could give him to treat infections and to put him under for surgery. Certain medications could be fatal. In August of 2015 he went into cardiac arrest at the movies and was saved by his ICD twice. What a blessing for our family, not only did we get the blessing of his diagnosis but his device saved his life.
Now Devon is leading a very active full life. He is 16, has his drivers license, playing basketball, kicking for the football team, playing golf and one of the top in his class. He is involved in Student Council, FBLA and Band. He dreams to be a kicker in college and possibly going to school to become a physical therapist.