Stories: Living & Thriving with SADS

My whole life, I have known that I have long QT syndrome. My dad’s side of the family was diagnosed in 1975, when treatment was vastly different from that of today. Although my family lost two of my uncles to long QT in the early ‘90s, I was rather nonchalant about my condition because I had never really been directly affected by it. From the time I was 6 or 7, I had a rehearsed medical definition that I could rattle off whenever anyone was curious about it. When people asked me what it was like... see more

Hi everybody, my name is Cindy Murphy. This past June 18th, my 14 year old son Mikey was on his way to meet up with his friends to take the train into Boston to go and watch The Bruins Stanley Cup Parade. He repeatedly told me what he wanted to buy at the parade for his Dad for Father's Day the next day, then kissed my cheek a few times and said good-bye. I told him to be careful and I got his usual look of... "I know Mom!!" About a half hour later, a policeman came to my door telling me that m... see more

I had always known that something was wrong with me and after 13 years of fainting, seeing all sorts of doctors and having all types of medical tests done, I was actually relieved to hear that I had LQTS. It may sound strange to use the word "relieved" but after 13 years of uncertainty, someone was finally able to tell me why I was fainting in school, on the subway, in the supermarket, at my friends' houses, at the doctor and other places. After 13 years of my life which was exactly the first h... see more

this story is written on behalf of my sister Nicole. she suffered sudden Cardiac arrest at the age of 20 years old. she is now 26 years old. The day she very suddenly collapsed was like any other. She was in the bathroom of our family home getting ready to go out with her friends. coming out to show us her outfits, she was in good spirits with no indication of what was to come. My mum was the first to respond to the sound of a loud thud on the tiles. as she walked into the bathroom she notice... see more

I want to share a story from my life with you; I hope you don't mind. ... see more

The Day was beautiful and sunny. It would normally have been just another summer day, but it was special because it was the day of my baptism. How little I imagined it would be the turning point of my life. My life began on January 30, 1979, in Anchorage, Alaska. My parents, Richard and Mary Lynn, moved to Walla Walla, Washington, after I was born and built a beautiful home in the country. Growing up I played in the creek on our property, rode horses, played the piano and had many times playin... see more

Back in March of this year I was at my grandmas when my grandpa at had fell I then came down to see what when at was going on. I then went to go up to get my gait belt when I fell. I went into full cardiaiac arrest. I was then in an induced coma for 3 days. I was then gradually brought out of the coma. I had a partical eblassion done in march. I then had a heart defilibulater put in. Then in april I went back because it fired. Then I went in again in may and then in June I went back and had my s... see more

Family History first: My brother, Mason's uncle died at 45, SCA. My cousin died at 21, SCA. My first son was stillborn. We do not know the cause. One cannot help but wonder now if it was LQTS. I experienced three years of heart problems with no specific overall reason. I had tachycardia, arrhythmia, dizziness, chest pain, etc. ... see more

I suppose you could say my case is "textbook". I was initially diagnosed with epilepsy. My story begins with the birth of my daughter at age 22. 3 weeks after her birth, I had my first episode. I was sleeping on the sofa. My sister called me for a ride to her new job. The phone must have triggered it. All I remember is picking up the phone. The next thing I knew I heard her calling my name over the phone. She says she knew something happened. I told her I was going to get my husband. I literally... see more

Hi everyone, Bill Layton here. I am writing this letter to all of our friends in Colorado and Wyoming and across the globe, to invite you to our annual Oktoberfest, to help raise money and awareness for the Sudden Arrhythmia Death Syndromes (SADS) Foundation every September on the third Saturday from 4PM -11 PM at Bill & Sally Layton’s backyard 3225 Brenner Place Colorado Springs, CO 80917... see more

At twelve going on thirteen I was like most kids focused only on traveling soccer and basketball, and trying to fit in at a school we'd moved to a couple years before. I thought my life was really just beginning and I'd finally started to discover my identity as an athlete. For me that identity provided security in a way I needed after spending my whole life moving every couple years. Then running the mile in gym class brought that security and identity crashing down. I began blacking o... see more

My name is Savannah and I am 1 ½ years old. I like to finger paint and play with my dog Buddy, and to dance to music. Mommy says I am so animated that sometimes I dance to the music on TV commercials and cartoons. Dancing is my favorite, but Daddy says my finger paintings are works of art better than Picasso. ... see more