SADS Spotlight: Lauren and Avery
Lauren and Avery Hannah Ages: 38 and 7 Condition: Long QT Syndrome Type 1, I was diagnosed at 13, Avery was diagnosed at birth. Treatment: We are both treated with Nadolol. I was diagnosed by EKG after my brother had a fainting episode while playing basketball. I...
read moreMy Heart: The Fragile Flower
Read Kennedy’s previous post for the first installment of her story. January 23rd. Some recognize this date as the day Richard Nixon announced an accord to end the Vietnam War, or the day LeBron James became the 7th and youngest player to reach the 30,000 NBA point...
read moreA Place for You
Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had...
read moreDay By Day: Learning to Live with LQTS
I have a life threatening heart condition called Long QT Syndrome (LQTS). I have an implantable cardioverter-defibrillator (ICD), a small electronic device implanted in my chest, under the muscle just below the collarbone. Its main function is to prevent sudden death...
read moreFragments of Hope
Mama’s house is gone Fragments remain as part of That once vital family I am one of those fragments My name is Mary I have a story to tell Dirt road, uninsulated house, outhouse, wood stoves- one for heating, the other for cooking, water from a pump nearby. The...
read moreSilent Killer
When you're six years old, the world is your oyster and your imagination is taller than you are. Nothing bad could ever happen because the toxic realities of life far surpasses our level of comprehension at such a young age. I always found comfort in the security of...
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