"My hope is that I live my life and it never goes off, but knowing I have the ICD is a real safety feature that makes me feel comfortable. There's no pain and I forget it's there. Sometimes I can feel it because it's kind of a weird, hard cell phone type piece in there," said Tolosky, who said she lives a regular life and doesn't have to alter her exercise or diet at all.
The Tolosky's started "Christie's Heartoberfest" as part of their healing process and to ensure Christie's early passing had not been in vain. What haunted them, said Tolosky, was that Christie had exhibited signs of Long QT Syndrome but doctors had never thought to test her for it. They want to let people know the warning signs so this doesn't have to happen to other families.
"Looking back, if we had heard of the disease, when she was lightheaded, passed out or felt dizzy, we would have known to ask a doctor to check her heart. It's easily treatable, which is why the awareness factor is so huge," said Tolosky. "Christie called my mom one day from college and said 'Mom ,I woke up on the floor; I remember the alarm clock going off and don't know what happened next,' and she had just passed out, which is a common reaction to alarm clocks in people with the condition."
The Heartoberfest was originally modeled after a traditional Octoberfest, with beer and crockpots of potato salad, said Tolosky, but over the years it has evolved into a "nice fall day" where family, friends and strangers eat good food, play some games, raffle off prizes and celebrate Christie's life.
"The event gets bigger every year, and more people come and bring friends. The more people that know, they're on the look out if a coworker says their child is feeling dizzy after football pracice, we really hammer it in that they should mention it to them and get the child checked out," said Tolosky. "It might be something more serious than just low blood pressure or low blood sugar, which is all they thought Christie had."