by kymera_editor | Feb 18, 2022 | Awareness, Long QT Syndrome, Parenting
The first time I fainted, I was a freshman in high school. I got up early to go pack boxes in the food kitchen, and I hadn’t eaten breakfast, and all of the sudden the world went black. I came to right away – everyone thought I was just hypoglycemic, so I didn’t go to...
by kymera_editor | Sep 13, 2021 | Advocacy, Awareness, Long QT Syndrome, Parenting, Schools
Can you tell me a little bit about your family’s SADS journey? In utero, our doctors thought that my daughter Madison had heart block, and I was sent to a specialist. They confirmed that it was not a heart block – she just had a low heart rate. When Madison was...
by kymera_editor | Nov 19, 2020 | Awareness, Connecting with others, ICD, Long QT Syndrome, Parenting
I was diagnosed with Long QT syndrome in July 2001, I was 23 years old. I decided to share my story in hopes that it may help someone in the future diagnosed with this same condition. When I was first diagnosed there was a girl my age that was also a...
by kymera_editor | Apr 23, 2020 | Advocacy, CPVT, Parenting, Sudden Cardiac Arrest
Lily and her sister Charlotte My daughter has CPVT. My daughter, Lily, suffered sudden cardiac arrest while swimming in our pool on July 8, 2012. She went without oxygen for an estimated 11 minutes. Lily continues her recovery from the resulting anoxic brain...
by kymera_editor | Apr 20, 2020 | Genetic Testing, ICD, Long QT Syndrome, Parenting, SADS Spotlight
Heather and her son Carter Name: Heather Darling Age: 33 Which SADS condition do you have? Long QT Syndrome Type 2 When were you diagnosed? A little over 20 years ago How are you treated? Beta blockers and ICD How/when were you diagnosed? One morning in fifth grade my...
by kymera_editor | Apr 20, 2020 | Awareness, Long QT Syndrome, Parenting, Sports/Exercise
Joey at golf camp through Children’s Heart Association in Cincinnati. When my son, Joey, was six years old, he was diagnosed with Long QT Syndrome Type 2. The day he was diagnosed was the hardest day of my life but I want to tell our story in the hopes that my...
