Our family had a very strong history of seizures. It began with Mom and myself and I passed it on to my children. We had been labelled with epilepsy and with medicine we lived a fairly normal life.
Chrissy began having seizures at seven years of age and Jimmy began at eleven or twelve. Jimmy was 22, married with a baby when I received a phone call on April 15, 2000, that would forever change our lives. My Daughter-in-Law Denise called to tell us Jimmy was having a seizure. I was getting ready to go to the hospital when we received another phone call, we had lost Jimmy.
I knew this was a nightmare and I would wake up anytime. There was no way Jimmy could be dead. He wasn’t just my son he was one of my best friends. How will I live without him? I didn’t believe this until we arrived at their apartment to see them surrounded by policemen.
My son was upstairs dead, with his two year old daughter Alexis across the hall, not understanding her life had forever changed. The impact of Jimmy’s death has been devastating, for everyone in the family. My daughter Chrissy had a horrible time accepting the death of her only brother – telling her was terrible.
We lived in fear for Chrissy’s life, afraid there was something the Doctors weren’t finding. If you research epilepsy it isn’t hereditary. There was just a missing piece to this puzzle.
Chrissy became pregnant with Jessica just about ten months after Jimmy’s death. I was scared to death for her life – I sent her for an MRI, had blood work done, and everything appeared fine, except she was dizzy a lot and suffered from rapid heart beating. I was afraid that after the birth of Jessica, she would have a fatal seizure and die like Jimmy.
On November 23, 2001 Chrissy and Chad had there baby girl. It was only ten months later my Chrissy was rushed to the hospital, and I was told again “I’m sorry we couldn’t save her.”
How does this happen twice? This was worse then any nightmare, my world had crumbled. How can I live without my kids? I was clinging to Chrissy for for survival, we were together all the time. I felt my life was over, and Jessica was only 8 months old without her Mommy.
It was only ten months later my Mom was rushed to St. Vincent’s hospital in Indianapolis, Indiana.
May 10, 2003, all the pieces to the puzzle came together when the Doctors came to tell me our Mom had a rare heart condition called Long QT Syndrome. They told me all the symptoms. I know at this time we had all been misdiagnosed for years and it cost me Jimmy and Chrissy, and the children had lost their parents. We were getting EEGs when all along we need EKG’s for the heart.
Myself, both grandchildren, and a few other family members, and my Mom. The only way to get Long QT is inheriting it. If you know of anyone having fainting spells, seizures, rapid heart beat, and a family history of sudden death with no explanation, they are at risk of Long QT. There are still a lot a people unaware of Long QT, and if you’re not aware of it you can’t treat it. Long QT is very treatable, and there is no reason that my children should be dead today.
Jackie Renfrow
