Stories: Living & Thriving with SADS

Our daughter, Hannah Toothman, was 12 years old when she was diagnosed with Long QT Syndrome in October 2010. That year Hannah lost her uncle, Jerry Toothman, unexpectedly at 39 years old apparently to SADS. At that time Hannah was an exceptional athlete, playing volleyball, basketball and softball. She had no symptoms of this condition, only a couple of complaints of feeling “faint” during a few really hot games in the summer.... see more

hayden is my first grand daughter. she was born april 15 2011 she is just 4weeks old.my daughter kelly had anormal pregnancy .at 38 weeks she noticed little to no fetal movemonts so she was put on afetal monitor.hayden heart beat was very slow.so after 24 hrs.the dr. decided to do a c-section.this was very stressful to our family we just didnt know if our little angel was going to be okay.so hayden was born 6pounds 9 oz PERFECT.THEY took hayden to the nursery to get her cleaned up.while in the... see more

Heidi Owen was a three-sport high school athlete and went on to compete for the University of Minnesota Track and Field Team. However, it was during her college years that she suffered a cardiac arrest and was diagnosed with Long QT Syndrome. Determined not to let life slow her down, Owen received an ICD in 2004, and has since run two marathons and two half marathons (as well as has married and has had two children). ... see more

My long QT story is a good one, at least in my eyes. I have always lived a normal, active life. Over this past summer, my daughter got a spider bite in her ear, and I was concerned that it may get infected. I had an overwhelming feeling/need to take her to the ER, even though it was already 11 pm. I didn't want to take any chances with infection. The ER doctor looked at her ear and said he saw no reason for concern, but he did show some concern about her low heart rate that he noticed while doin... see more

Ian Weeks was a very active kid, an avid athlete and weight lifter holding an unbreakable weight lifting record at Fayette County High school. Ian was always the healthy and humorous kid in a family of 8, so there was never a concern about him having any sort of health condition. Ian does have a family history of congenital heart problems, but never thought that he or any of his siblings could be affected. During that time, a doctor visit just meant a listen to the heart and if everything sou... see more

Never In a Million years when at age 11 when I was diagnosed with LQT 1 did I think I would be not only surviving thru it all my life but Having to be told not 1 but 2 of my wonderful children have it.... see more

July 7, 2012 changed us all. (Update: we later learned he had Long QT Syndrome, type 5. Exceedingly rare) It was the night my son suddenly died, and somehow managed to live. Jake is 16, healthy, normal in every way. He participated in some sports, weightlifting, and was in the sheriff's explorer's academy in Kingman, AZ. He wanted nothing more than to be a Sheriff or Highway Patrol. In honor of that he committed to attending the Mohave County Law Enforcement Explorer's Academy, MCLEEA in Lake H... see more

One morning I didn't wake up. He woke up beside me, just as he had for the last six years. But one thing was very different on this particular morning. I wasn't already awake, the smell of coffee drifting from the kitchen. I wasn’t standing next to the bed, saying “Time to wake up, Mr.” I wasn’t whining at him to turn off the alarm clock. I wasn’t sleeping peacefully beside him, with our dachshund curled up against me. I wasn’t doing any of these things that I had done countless times before. I ... see more

I would really like to add my brother's story to your website. His name is Jason Ashe and we live in Trinity, North Carolina. He is 22 years old and before May 2, 2006 was in perfect health condition. He played football ever since he was little and even played college football. ... see more

Strong spirit, kind heart and a clear vision of the future are three phrases I would use to describe my oldest daughter, Jenna. Her strong spirit was not shaken when diagnosed with LQT syndrome in the fall of 2001 and it was her clear vision of the future that allowed her to participate in the decision to have the AICD implant. Jenna has never let her diagnosis of LQT or her implanted defibrillator slow her down. The Blue Ribbon Award ... see more

On May 12, 2011, I went to the gym for my normal noon workout. I completed my warm up, got ready for the prescribed workout of the day (WOD) and at 3, 2, 1, Go! I started into 20 seconds of pull ups. At the end of the 20 seconds, I had 10 seconds to rest and write down my completed reps before I would start into the next 20 seconds. As I bent over to write my number down, I became dizzy. I stood up to say something and that is all I remember.... see more

I am not sure of a date that Long QT was found in my family, I do know that my uncle (my mother’s brother) and a distant cousin passed from having undetected Long QT. Please let me note that I am not sure what type or types are in my family as of right now! My Grandma (my moms mom) and I both have none active LQTS and are currently not taking any medications for it. My Mother has an active case of LQTS and is currently on medication for it due to having problems. So I guess that is where my you... see more