Fund in Memory of Linnie Weiler

I came from a family who had a lot of history of sudden death and what they thought was epilepsy. My dad had seizures when he was young, as did a few of his siblings. Four of his siblings died suddenly at a young age but they never knew why.

The first time I passed out was when I was 6 and was swimming in my kiddie pool. Nobody was outside watching me so when I came to I went in the house and my mom and dad noticed I was kinda pale and blue. They said maybe I got too cold. Over the next several years I had a lot more, when I was scared, and nobody ever noticed anything. By that time I thought I was falling asleep at some bad times. It wasn't until I was 10 that my dad saw me pass out.

When coming to the first time, I told him it was normal and I did it a lot. I ended up passing out about 3 times and couldn't convince my dad I was okay so he took me to the hospital. They kept me a few days and diagnosed me with epilepsy, and I was put on seizure medications. The medication never really helped with the seizures. When I was 13 my dad had a heart attack and died. After that I was sent to a group home for girls because I had some behavior problems. I had a couple syncope (fainting) episodes there, and I was taken to a neurologist. He said he could figure out why I had seizures, and he changed my medications.

I was put in foster care when I got out of the group home because my mom didn't want me and didn't seem to care that I was abused by someone living with her. After going to my foster parents, I didn't have any more syncope episodes; so after 3 years I was able to come off the medications. I had to wait to get my driver’s license, so finally - my senior year of high school - I got my driver's license. After graduating I had another episode which I didn't report because I just got my license.

So, 6 years later, in 2010, I am married with a 2 year old little girl and I am pregnant with a baby boy. My son's heart rate always stayed low and the DRs could never figure it out. A few weeks after my son was born, I had another seizure. I went to my childhood doctor and again was put on seizure medication. A month later I changed doctors and went to a new doctor because I thought I was having anxiety attacks, because my heart would beat funny at times. He did an EKG and told me my qt interval was prolonged, so he pulled some of the EKGs I had had at the ER - the same thing: prolonged qt interval. One of the EKGs was when I was pregnant and had some weird feelings in my chest. My qt interval on that one was almost 600, and it shows it on the printout, but I was told it was normal by the ER doctor. I was sent to a local heart Dr, who sent me to an EP two hours away. The EP said he thought it was Long QT 1 and gave me and my husband a long list of do's and don'ts, mostly don'ts though. I was put on Atenolol and given a genetic test.

When the test results came back 12 weeks later positive for Long QT 1, 2 and 3, my EP wasted no time in putting an ICD in. I had some issues during the surgery and some since the surgery with my device.

I took my kids to a pediatric heart Dr and my little girl's EKG was fine, but my son's was a little prolonged. Their genetic test came back as their EKGs predicted. My son has long qt 1 and my little girl doesn’t have it. My son is on a beta blocker, and so far he is doing good on it; and I hope he continues to do well. So far, none of my 5 siblings has had any signs of Long QT Syndrome, and none of my family takes it seriously. My younger brother is the only one who went to the Dr and took his kids to get an EKG, but they are all negative.