SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

In 1998 my oldest daughter Eileen was diagnosed with Long QT Syndrome Eileen was 15 years old at the time and a Junior in High School. We were lucky....... it took two fainting spells before I took her to her doctor. At the time..........Eileen was playing varsity soccer, varsity swim team, dancing, and was the only female on the high school wresting team. Eileen wanted to go to Annapolis for college and if Annapolis did not work out, Eileen was heading for a soccer scholarship for college.Eileen had a 90 average in high school. Eileen donated her time to teach an aspiring dancer who could not afford dance lessons. Eileen's diagnosed Long QT changed our entire family life.
Our entire family was tested after Eileen's Long QT Syndrome diagnosis. Her father, paternal grandmother tested positive. Myself and Eileen's younger sister tested negative.
At 16 years old Eileen had the first of 3 IED surgeries. our family became comfortable with Eileen's Long QT Syndrome.
In February of 2006 Eileen got married. In August of 2006, Eileen's 21 year old sister Kerry Ann was found dead. Kerry Ann had woken up to the alarm clock on her cell phone. Kerry Ann shut off the alarm and suffered a life ending heart arrhythmia. The medical examiner could not find a cause of death and declared her death "due to a family history, Long QT Syndrome". When Kerry Ann died, we were unaware that Kerry Ann had Long QT Syndrome.
I had become complacent I was unaware of the Familion blood test for Long QT Syndrome. Kerry Ann had normal EKG's, she had no symptoms and now she is gone and our hearts are forever broken.
In February 2007 my daughter Eileen gave birth to a beautiful little girl with big blue eyes named Kerry Marie. Kerry Marie had several EKG's that all came up normal. I was very worried, I only had two children and they both ended up with Long QT Syndrome. I made my husband have the Familion Blood test done. He has the most common genetic markers for Long QT Syndrome. Next I took my granddaughter for genetic testing
Kerry Marie tested positive for the same genetic markers as her grandfather. At 14 months old Kerry Marie is now on 1.5 ml of a Beta Blocker 3 times a day. My granddaughter is now medicated and is being monitored by a pediatric cardiologist.
Thank goodness for genetic testing. I do not think this family could survive another loss.

I am so moved by your story. Because everyone in a family has a different expression of the disease, it's not always easy to tell, just by and EKG, if a person has the family mutation or not. I'm so glad that you tested your granddaughter!

My deepest sympathies on the loss of your daughter. I live with the fear of losing my little girl on a daily basis. My 7 year old little girl was diagnosed with long qt in 2005 at the age of 5. She kept telling me her heart was hurting and after many tests, the hurting was reflux and then the discovery of long qt. I think my heart almost stopped with the news and then the guilt of knowing it was me who passed this on to her genetically. She had the familion testing done as did my older sons. My middle boy is borderline long qt and my oldest one is "fine" according to reports. She has been on a beta blocker since 2005. My extreme frustration is with the insurance companies who do not feel it necessary to cover AED for families with children of this life threatening condition.
I've searched high and low and have sent many letters to many organizations with no luck. I'll keep searching!

Tinamarie-
I consider myself very lucky. My grand daughter is diagnosed and doing very well on meds. We did lose our daughter Kerry Ann and we are still broken hearted. I have to think of it as...... Kerry Ann sacrificed herself so her niece Kerry Marie could live. If Kerry Ann had not died we never would have had Kerry Marie genetically tested for Long QT syndrome.


I never heard of anyone being borderline Long QT Syndrome. Is your middle son also on meds?
As far as an AED people still do not understand how life threatening this genetic disorder is. I was at the boat show @Jacobs Javitzs Center in New York and there was a portable AED for around $700.00 we are looking into buying one for our house and one for my daughter's house. As soon as I get the information I will E mail to you.

I cannot understand how bad you feel, because you passed the Long QT gene onto your children. I know I feel like a failure as a parent because I did not protect my daughter and now she is gone forever. I still cannot believe I have to go to church and then to a cemetery on her birthday instead of out to her favorite restaurant for dinner.

Tinamarie, you can make this better by doing everything possible to keep your children alive and healthy and it sounds like you are on your way. Remember your children are alive that is the most important thing. Your guilt you will have to work through........have you thought about counseling?

Maureen

Did insurance cover your genetic testing? Neither mind nor my husband's will. Wondering of other options?

My husbands insurance gave preapproval for Famillion blood test.. I went over each aspect of the test with his insurance co and they individually covered each aspect of the test, but never heard of the total test. His insurance had a deductible after the deductible was met it was suppose to cost us $1200.00. But low and behold we received a bill for $5300.00. Right now PGX, is battling it out with Empire.

My son-in-laws insurance only covered $100.00 out of $1000.00. He pays extra for a special rider to cover these things. What a waste of money!

My daughter is currently pregnant with #2 and we will have to have the new baby genetically tested also.

Keep fighting with insurance co. Write letters to CEO etc. Write letters to newspaper, contact local TV news. Just remind them that more children die of Long QT than leukemia. Contact someone at SADS maybe they can help you with the media and getting your voice out there.