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Audrey Claire Koch is our precious, smiling daughter, and we are amazingly blessed to have her alive with us today! This is her story – up until today, when she is 19 months old, living and thriving with Long QT Syndrome!

Audrey Claire Koch is our precious, smiling daughter, and we are amazingly blessed to have her alive with us today! This is her story – up until today, when she is 19 months old, living and thriving with Long QT Syndrome!

Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most…

Meet my amazing son Oakes: Today he is doing just fine! Oakes was diagnosed in utero with Truncus Arteriosis. Oakes has had open heart surgeries, dozens of procedures, cath lab trips, unbelievable amounts of medications, support and interventions. He has had complications and surprise diagnosis. Oakes is 11 months old, yet his story is big, and it is complex. Without a doubt part of his story is about donation. He has received donated blood, donated tissue, valves for his heart and most…

On March 30, 2010, Annie Grace Sabin was born with multiple heart defects.  Her official diagnosis was tetralogy of fallot with absent pulmonary valve.  Over the course of her four-month life, Annie endured four major surgeries (two requiring bypass) and multiple minor surgeries.  She was taken to the brink of death several times and continually amazed us with her will to live.  For four months, she fought valiantly to be here with us.  Her fight allowed us precious time to memorize tender…

On March Annie Grace Sabin was born with multiple heart defects. Her official diagnosis was tetralogy of fallot with absent pulmonary valve.

A genetic heart rhythm condition called long QT syndrome may be behind sudden fainting and cardiac death.

A genetic heart rhythm condition called long QT syndrome may be behind sudden fainting and cardiac death.

The Echols Family - living and thriving with Long QT doing an interview with the SADS Foundation for Radio Disney!

The Echols Family - living and thriving with Long QT doing an interview with the SADS Foundation for Radio Disney!

www.facebook.com/lillianasangels   Long QT Syndrome type 2

www.facebook.com/lillianasangels Long QT Syndrome type 2

‘Long QT is unpredictable.’

Experience: I have sudden death syndrome

Experience: I have sudden death syndrome. ‘Long QT is unpredictable.

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