Stories: Living & Thriving with SADS

If you look at a list of things NOT to do if you have LQTS, I have probably done every one of them.... see more

In September of 2011 me and my wife Nikki were going to dinner with my two sisters and their husbands and my wife's sister. We had just gotten out of the car and started walking into the steak house when I saw my wife stumble and grab onto her sister. We all stopped walking and turned to her just in time to see her collapse. She started having a really intense seizure that lasted for a couple of minutes. She came out of the seizure and was not breathing or moving. She came to and started having ... see more

Devon’s Story Devon Parrott was born August 28, 2002. He has been an active, happy, healthy kid his whole life. He first started playing sports when he was 3 ½ by playing soccer. He loved soccer but started out a little too timid for his father and me. He is a very caring and sweet boy and never wanted to hurt anyone’s feelings. As he learned more about the game he pushed himself to be competitive and was scoring 3 to 5 goals every game. When he was in kindergarten he began playing baseball an... see more

To say strange is an understatement for our family. In April 2013 we were at ball practice for my 6 year old son. As a coach and Father of Jaren I was proud of the hit he made. He round all bases and touched home base when he collapsed. Long story short, he had LQTS. We ended up in St. Louis Children's Hospital where he received his defib/pacemaker. It was a true act from God that he survived. In Feb 2013 we find out by DNA that our 4 year old and both of us have LQTS type 1. My wife and I both ... see more

My daughter Dominique, age 10 was diagnosed in October with LQTS. Over the last 3 years she has had unexplained fainting spells that put her into seizures. After her last episode of unconsciousness (August 2015, first day of school) we started the process of trying to figure out what was going on. With each episode , she had been doing some type of physical activity. She has had multiple EKG's that showed a prolomged QT interval. After , she had her stress test (done on a friday) I received a ... see more

Everyday we are faced with challenges that we must overcome, but are we really ready to face death? I was definitely not! I was a normal lively and energetic 25-year-old girl driving down the busy streets of Houston Texas when my life almost came to a quick end. On March 18th, 1998 I was faced with the unexpected. I went to an interview for a job and had a brief syncopal episode, awoke and then went into cardiac arrest. Fortunately for me, the two women who were with me knew CPR and were able t... see more

I have a great friend, whose father climbed all the high peaks in Europe, South America and those in our continent. When he settled down and married his family quickly began to grow-ended up with 7 kids-my friend David being one. Now, when you have a family of 9, you find affordable ways to have fun together-so this family learned to hike. David's dad was also a founding member of REI, and required that each child carry a backpack equal in weight to his age. They had to carry the ten essenti... see more

When I was 15 years old I started passing out repeatedly. The doctors did not know why. I was referred to a large children's hospital and a wonderful doctor was able to give me the correct diagnosis of Long QT Syndrome and got me started on beta-blockers. When I was diagnosed my family was tested and we found out that my mom and maternal grandfather also have LQTS. I did pretty well on the beta-blockers and got married and had four wonderful children. ... see more

My story is short but shuld not be ignored. I am 21 years old and my Family lost 4 family members to Sudden Arrhythmia Death Syndromes, all to be believed prolong qt cases. My great grandfather died many years ago and I was told it was due to "heart failure" and never thought anything of it. several years later my uncle Tom died during a physical activity the cause of death was ruled " unknown heart failure". when I was 10 years old my only brother died at an amusement park during a physical ac... see more

Along with SADS, I celebrate my own 20th anniversary this year…a 20-year story of getting my life back thanks much in part to the SADS organization. On March 23, 1992, almost exactly twenty years to the day that I am writing this, I was found unconscious in my bedroom. Miraculously, I survived each time I was coded and defibrillated multiple times over a three-day period while the doctors tried to determine the cause. Literally days after I had become engaged to be married and just weeks afte... see more

This is a story about my daughter, Felicia, a very athletic teen who loved to play volleyball, basketball, and playing football in the backyard with friends. She was also in gymnastics, ballet and cheerleading. Around January of 2011 my daughter started coming home telling me that every once in a while, when she was at school, her chest would hurt and her heart would pound really fast, only for a few seconds, but it scared her. As a mother with a teen daughter I would tell her she is probably ju... see more

September first 2012 was a milestone for my husband Bill and me. It was our 50th wedding anniversary. For years we had planned a Mediterranean cruise to celebrate the occasion. On September 29th our daughter, Christy, took us to the airport to embark on our journey. She had called me the night before to tell me she was having some right chest pain that radiated to the back of her right shoulder & said she didn't feel very good. My mind skipped back to 4 days earlier when I received a call at wor... see more