Stories: Living & Thriving with SADS

Aloha- this is our precious daughter Tisha. She is 19 months old, and has the most beautiful smile that simply lights up the room. She also has LQTS8, or Timothy Syndrome Type 2.... see more

Tom was diagnosed with LQTS when he was 9 years old. With no family history of sudden death, the news was quite a shock. Tom’s medical history has been very eventful. The day after returning home from a church youth ski trip, he had a full cardiac arrest. Our minister brought pictures from the trip to the hospital. There was Tom with his friends in a victory stance on a high peak It was hard to believe that our son, in the hospital bed on a vent, had been celebrating life on a mountain top just ... see more

About a year after her father's sudden death, Toni, her brother Jimmy and I moved to a small duplex at the edge of Peachtree City. Our house had been sold and once Jimmy graduated from high school we were planning to move, probably out of state. The morning of May 19, 1988, I called Toni to get ready for school. I knew she had not been feeling well the past few days. She had complained of a sore throat, and was stressing over her final exams. ... see more

I was diagnosed with WPW at the age of 24. The diagnosis came after playing softball and 2 hours later, my heart rate was over 200 beats a minute. After 24 hours in a local hospital having several tests done, my heart rate returned to normal and the diagnosis was able to be made. Three months after the diagnosis, my heart rate jumped again out of rhythm just by putting up Christmas lights with little exertion. It took two EP ablation studies for the ablation to be made, and now 10 years la... see more

It started on December 1, 2009. My daughter, Morgan, was 12 years old and out of the blue she passed out in our kitchen. I took her to the ER where test after test was performed, noticing they were paying particular attention to her heart. 9 hours later, we were told that on all of Morgan's EKG's it showed she had a borderline high LQT. More tests, more EKG's, holters, doctors, over and over again. It wasn't until we started digging into our family history and really thinking through things that... see more

My son Eric Heidebrink was 12 years old when he was playing ice-hockey. Eric had the puck and passed it. When he passed the puck we stopped watching him and continued watching the puck. The game was stopped and we looked down the ice and our son was laying facedown on the ice. Coaches and Emergency personnel attended to Eric. We were unsure if he was tripped or hit or what had happened. Eric regained consciousness on his own, was taken to the side lines where he sat for awhile and then was broug... see more

Troy was born in March, 2010. For nine months, my husband called him Evan. But, when I saw him for the first time, I didn't think that he looked like an Evan. I named him Troy for a young man that I grew up with that past away far too soon. He died playing touch football at college in 1990. He fainted and after the second collapse, he could not be revived. We all took it pretty hard, but for some reason, Troy never left me. ... see more

I am a forty one year old survivor of LQTS-type 2. I was diagnosed when I was about 13. Back then, they treated us with Dilantin and all sorts of other beta-blockers. It was a fairly new discovery as they thought most kids that passed out with LQTS had Epilepsy. The beta- blockers normally given to an epileptic helped those with LQTS so no one knew the better. My doctors were very understanding in my need to be a "normal" kid and allowed me to participate in as many activities as I wanted wi... see more