Keona: In Memory of Elijah and Chloe

Can you tell me a little bit about your family’s SADS journey? I have one surviving daughter, who is 14 and has Long QT Syndrome. In my family, we have an aunt with Long QT Syndrome – who is the only reason that I ever knew my son had it, which led to me knowing I had...

Pregnancy Stories: Kellie Moore

My daughter, Sophia, will be four in April. She was born in 2017. I really didn’t have any huge concerns going in. It was just very exciting. But of course, I wanted to be very careful and make sure that we were taking proper precautions as needed. And my OB-GYN...

SCA Survivor Stories: Lindsay Casey

On January 13th, 2019, I woke up to a seemingly normal Sunday. I was a healthy, 30 year old mother sharing breakfast with my 11 month old son and my husband, Scott. When I went to get our son ready for church, Scott had a feeling that he needed to come check on us....

SADS Spotlight: Cian Bennett

Name:  Cian Bennett Age:  13 Diagnosis:  Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) Age of Diagnosis: 13 What led to your diagnosis?  I had a fainting episode at home and my pediatrician sent me to a cardiologist.  My first visit was okay and they...

SADS Spotlight: Jaclyn

Name: Jaclyn K. Age: 38 Which SADS condition do you have? LQTS1 How are you treated? Treated with beta blockers from age 14 and AICD implant at age 24 (on my 4th device currently) When were you diagnosed? I was CORRECTLY diagnosed after 9 yrs of fainting and multiple...

A Home Away From Home, A World Away

by Alexis H. Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received care in Alberta, Canada had posters for a heart camp in California on the wall but when I asked my doctor...