Stories: Living & Thriving with SADS

When I was 11 years old, I passed out in school. I was taken to the emergency room and many tests were done. The doctors were suspecting that it was my brain but after many tests everything was normal. I went back to my normal activities. When I was 13 years old, I had a seizure when I was running in gym class and I went to the emergency room again. The doctors said since I already went through the testing for my brain and it was normal, it was probably my heart. After going through EKG, echo, 2... see more

Alanna Kathleen- Bright, beautiful, outgoing, full of life and so very special. This incredible girl is four years old and is thriving as she lives with long QT. Her sassy personality lights up a room wherever she goes. ... see more

I really wanted to tell my son's story.. A prefectly healthy, happy 14 year old.. Until the fainting started. ... see more

My name is Amber and I am 25 years old. I am happily married and have 2 kids. My son, Corbyn, is 3 and I have a 3 month old girl, Kinley. They bring such joy to my life and I love them dearly. I cannot imagine what my life would be like without them. That is why I think it is important to share my story.... see more

Living with Long QT. I was diagnosed with Long QT Syndrome, during February 2008, when I was 15. ... see more

On 9-10-11, I gave birth to a beautiful 5lb 12oz baby girl. I chose the name Katie for her. When Katie was 6 weeks old I took her to the local hospital for a little trouble breathing. She stayed the night there for observation. After a quite night, the doctor came in and said he thought she was fine but was going to send her to Lubbock 'just in case'. I was quite confused by this but agreed. Katie slept through the 1 1/2 hour ambulance ride. Once we arrived, we were taken to the children's floor... see more

I was diagnosed in October or November 2010 with Long QT Syndrome type 2. I was 18 and studying to take the asvab to join the military when someone reached out to my mom telling her about Long QT being genetically inherited on my real dad’s side of the family so she immediately setup and appointment in Atlanta because that’s where the other ones had already been tested for Long QT. We went down for an appointment on a Tuesday and my EKG came back normal but I found out that EKGs came comeback as... see more

My name is Andy. I am 51 years old and have been living with ICDs since 1998 and am currently on #4 (the last three have each lasted 4 years). I have a long history of heart issues. I was born with Tetralogy of Fallot, a common congenital heart defect, had it corrected in 1965, and had a pretty normal childhood. I ended up with another repair in 1975. High school, college, and grad school went smoothly until I developed Atrial Fibrillation (A Fib) in the late 1980s. A Fib is a pretty harml... see more

Audrey Claire Koch is our precious, smiling daughter, and we are amazingly blessed to have her alive with us today! This is her story – up until today, when she is 19 months old, living and thriving with Long QT Syndrome! In April of 2010, we were excitedly 20 months pregnant, with our third child. At 39 years old, I was used to the doctor appointment schedule including the routine Perinatal visit, in addition to all the regular OB appointments. At the 20 week Perinatal appointment, our li... see more

Our journey started when my 12 year old (now 13) son was having bouts of passing out. He had been treated for a concussion from football where he was the quarterback at the time. On one particular morning he passed out from, of all things, my blender. After a call to the doctor Dylan was immediately sent for an EKG. We got results the very next day that Dylan had a "prolonged" QT interval. Whatever that was. After months of trying to find a doctor with knowledge of this we ended up in the ER aft... see more

How it all began: Our daughter has been diagnosed with CPVT! Our story starts approx. 3 years ago, July 20th 2012…we went to SeaWorld, and Isabella ( 7 yrs. old) wanted to ride the new roller coaster…honoring her bravery we did it. Approx. 3 seconds into the ride she 'passed-out'. She remained unconscious the entire ride. I carried her off the coaster, laid her down, and to our good fortune she woke within seconds. Alert, oriented, and crying. The next event happened approx. 3 weeks later. She w... see more

Our 11 year old son Benjamin was born with the heart defect Transposition of the great arteries, and had open heart surgery at 5 days old. We were told that he could never play contact sports but could lead a normal life otherwise. He had been followed closely by cardiologists. Benjamin had been doing great. He started 6th grade and was loving school. We had signed our 4 children up for swim lesson like we often in the fall. This is when Benjamin experienced sudden death syndrome.... see more