Back to search results

Organization Information

Children's Heart Syndromes & Death Prevention Foundation


More than 11 young lives are lost each day from Sudden Arrhythmia Death Syndromes (SADS). Join us to raise awareness, support families, and save lives!

Real Life

Justin was born August 9, 2011, and was diagnosed with LQTS2 just eight hours after birth. Justin lost his color shortly after he was born and the nurse initially thought it was his blood sugar, but she listened to his heart and thought she heard a murmur. He didn't have a murmur, but because she heard something they ordered an EKG and a chest x-ray. The results landed in the right hands and they immediately transported Justin to the highest level NICU. The pediatrician did not know exactly what was going on, except that it was something with his heart. And we did not know if Justin would live or die.

It was a heartbreaking birth experience. Justin spent two weeks in the NICU and we were allowed to take him home once we had learned CPR, were trained on the heart monitor, were instructed about his medicine, and had purchased an AED. The emotions and stress at the time were beyond overwhelming. Justin's birth story still brings tears to my eyes, but we are the luckiest parents in the world because his LQTS was caught.

Justin is now a happy and active little boy. We are grateful to the SADS Foundation who has been invaluable to us in Justin's journey with LQTS. They helped our family during tough times and helped prepare us for Justin to safely enter pre-school and be successful. They do an amazing job in educating, advocating and supporting our community. Please give so they may continue to support families and save young lives. -The Paul Family