Kerry Ann Schulman

To tell Kerry Ann’s story, I must start at her death.

My sweet daughter, Kerry Ann, passed away on August 28, 2006. Kerry Ann had just turned 21 years old.  Before going to sleep that night, Kerry Ann set her cell phone alarm to wake her up for work. The following morning Kerry Ann’s phone alarm rang; she shut it off and suffered a life-ending heart arrhythmia.

Kerry Ann was never diagnosed with a heart arrhythmia. Kerry Ann was tested in 1998 when her older sister, father and paternal grandmother were all diagnosed with Long QT Syndrome. Kerry Ann had no symptoms of Long QT. She did not have palpitations or dizziness and her EKG was normal. We knew at the time that only 70 % of the people with Long QT Syndrome have symptoms. We assumed, as her pediatrician and as her pediatric cardiologist did, that she did not have Long QT Syndrome. In 1998 when her older sister Eileen (15 years old) was diagnosed, Kerry Ann was only 12 years old. Eileen had her first of three pacemaker defibrillators implanted at 16 years old. Eileen had to quit all sports and her dream of going to Annapolis. At the time Kerry Ann said to me she wished she had Long QT Syndrome instead of her older sister Eileen. We did not know how much Kerry Ann could see into the future.

Now we must live every day with broken hearts, wondering how to get through another day without Kerry Ann in our lives. We cannot bring Kerry Ann back, though God knows we have tried to wish and pray her back to us. But, we can try to prevent future generations from dying from Long QT Syndrome.

As most of you know, my oldest daughter Eileen gave birth to a beautiful blue eyed little girl named Kerry Marie. There was a 50-50 chance Kerry Marie would have Long QT Syndrome. I do not trust those 50-50 odds. I only had two children and they both had Long QT Syndrome.

Kerry Marie has had several EKGs and all have turned up normal. In the fall of 2007, Kerry Marie’s grandfather had genetic testing done to find what genetic markers our family has for Long QT Syndrome. Once we received the results, we had Kerry Marie genetically tested to see if she had the same genetic markers for Long QT as her grandfather. On May 1, 2008 Kerry Marie’s results came in.  Kerry Marie is positive for Long QT Syndrome. I know some may think this is a scary diagnosis, but as her grandmother, I think it is good news. Kerry Marie is now medicated daily and is being treated by a Pediatric Cardiologist.  Kerry Marie will learn to live and thrive with Long QT Syndrome and have a long healthy happy life.

I know we would never had Kerry Marie genetically tested if her Aunt Kerry Ann had not died from Long QT Syndrome. We like to think that our daughter Kerry Ann died so her niece could live.

Now I need your help.  I need you to donate to the Sudden Arrhythmia Death Syndrome (SADS) Foundation. I would like people to be educated about Long QT Syndrome. I would not have known about the genetic testing for Long QT Syndrome if not for the SADS Foundation’s web site. I need everyone to recognize the symptoms of Long QT Syndrome. I do not want another family to suffer the loss of their child as we have.

The SADS Foundation exists to save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.  You can learn more about SADS by visiting www.StopSADS.org, calling 1-800-STOP SAD and joining their Facebook page.  Please make a contribution to this important organization and save young lives.