My 16-year-old daughter Kristi, was a good athlete, and loved playing on the Volleyball and Junior Varsity basketball team. We were all so proud of her!

Kristi liked to sleep late on Saturdays, so she didn't eat before rushing to practice. Then the call came from the coach. Kristi had passed out and they wanted me at the school ASAP. Thinking she had low blood sugar from not eating, I tried to be calm, even as I saw an ambulance leaving. But Kristi was in the school with the coach, who explained that the girls were sitting on the floor when they were told to start running laps. She had only gone a few steps when she collapsed.

She appeared blue around the mouth so they called 911. She was upset and shaky, so I took her to the hospital to be checked out. They took an EKG and since her primary care doctor was out of town, the on-call doctor was brought in. Kristi was admitted right away.

The next day, while talking to my sister, I remembered that she has an implanted pacemaker. Several years ago she was diagnosed with something that might be inherited, so I had gone to a cardiologist to see if I had this condition, but he said I was fine. As I related this to Kristi's doctor, he said it looked like "prolonged qt interval".

Doctors were busily making phone calls when Dr. Kretsinger called a friend from medical school, Dr. Loren Berenbom, who is an EP at St. Luke's in Kansas City. He immediately scheduled Kristi to be transported by ambulance to see him. Holy smokes!

Pete and I arrived in Kansas City to find that Kristi had been already admitted and seen by Dr. Berenbom. He was pretty sure that Kristi had Long QT syndrome (LQTS) and he wanted me tested right away, as well as Kerri, my other daughter. I had been treated for epilepsy since I was 17 and was taking Dilantin and Phenobarbital.

Despite those medications, my EKG showed Long QT, so I was put on beta-blockers immediately. Kristi's tests looked borderline, but she had a very slow heart rate and a dangerous T-U wave, so a pacemaker was immediately implanted. We held our breath, not knowing how stable life was going to be. I was later weaned off Dilantin and Phenobarbital, even though the Dilantin possibly saved my life.

My brother, Rick, has 4 children and he asked me to talk to Dr. Berenbom, to see if he would check them all for LQTS. As Rick and I spoke, we thought of our older brother, Randy, who had died suddenly at age 18, in 1966. Could that have been Long QT rather than the cerebral hemorrhage we always thought it was? Dr. Berenbom thought so, but he'd check Randy's records.

As Dr. Berenbom listened to a more detailed family history from me, he suspected that our mother might also have died from Long QT at age 57. The more questions we answered, the more questions we had. There were several sudden deaths in the family. We had lost an uncle, a cousin, a brother, our mother and possibly several other uncles. This was very unsettling, and certainly not reassuring! Were these caused by Long QT?

When Rick was actually diagnosed, I began to call aunts, uncles and cousins. Most of them denied that the deaths could have been related to Long QT. fter all, my grandmother, Elsie was 97 at that time, was married twice and had 9 children altogether. She rarely took medicine and appeared to be in good health, although she was unaware of what was going on around her.

The family argued about this a bit until one aunt, Grandma's caregiver, took her for an EKG. Guess what? Grandma had a prolonged qt interval and could have passed this on to all 9 of her children.

After contacting the Long QT Registry in Rochester, I filled out their forms. But the more information I gave them, the more interested they were in our family. I felt like I was on a mission now and was more than happy to help them. Old medical records confirmed that Mom and Randy both had Long QT and I did not want to lose any more family to this! At least not without trying to spread the word.

It was now 1997 and several genes for LQTS had already been found. A large family like ours was a great opportunity for research, and many of us had already sent blood to Dr. Mark Keating in Salt Lake City - but they wanted more family members to participate. I was becoming overwhelmed and asked Rochester for help.

Dr. Moss called from the Registry to say that he had spoken to Dr. Berenbom and they decided that they would like to do Long QT screening of ALL our family members, children, and spouses - in Kansas City. Dr. Moss would address us and answer our questions about Long QT.

Blood samples would be drawn, EKGs would be taken and the information would be shared by two researchers, Dr. Mark Keating and Dr. Jeffrey Towbin. Over 100 people showed up on that day in April 1997. Grandma was not able to attend, but we did get a sample of her blood.

In the fall of 1997, the CARE Foundation arranged for Dr. Towbin to come to Kansas City and speak about Long QT. It was an informative session, with Dr. Berenbom, Doris Goldman and Dr. Towbin answering our questions. We were wary that our gene might never be identified, because so many of our family seemed to be "borderline."

Finally, in December 1998, the researchers at Baylor identified our family's genetic mutation on chromosome 7 (HERG). We now know who has the mutation and who does not. We were all amazed as the events unfolded in our family, but were so fortunate to have the right people on the scene at the right time.

In April of 1998, my grandmother passed away at the age of 102. She never took heart rhythm medications, never knew about Long QT, or how many of her family inherited it from her. I thank God for that! I am grateful that Grandma lived long enough to "donate" blood and prove that you can live to 102 with Long QT!