When Christie Tolosky died suddenly in 2005 at just 24 years old, her family and friends were in shock. Tolosky was a seemingly healthy and active young woman who loved everything about life, especially horses, and who was planning to go back to school to pursue human services or education.
Christie didn’t get to fulfill her dream of helping people through a career, but she did help her very own family in a big way.
After Christie passed unexpectedly, my brother and I were both given a full check up because there was nothing that explained why she passed away and doctors didn’t know if it was genetic, said Melissa Tolosky, her sister. `What they found in me was that I have Long QT Syndrome and Christie had it too.`
Tolosky’s brother, mother and a cousin were also diagnosed with the same condition, which falls under the category of Sudden Arrhythmia Death Syndromes (SAD). The Tolosky’s are rasising money for the SADs Foundation for the fifth year in a row on Saturday, Sept. 18, at the Columbia Pavilion in Saratoga State Park with `Christie’s Heartoberfest,` a day of fun to remember Christie and raise awareness about a condition that could have been prevented had it been detected earlier.
`I was immedietely put on a beta blocker, which is a simple medication that lowers blood pressure and keeps the heart out of the higher danger zone it can get into. I’ll be on it the rest of my life but it’s a pill every night, so I don’t complain about that,` said Tolosky. `I have an ICD, which is like a pacemaker and defibrillator, implanted in my chest for a precaution. If something happens where my heart goes into arrhythmia it will shock it into place.`
Tolosky said most of the time, she isn’t conscience of the preventative measures she has in place to potentially save her life.
`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.`
Tolosky, now 28, said she was 22 when her sister passed, and it’s strange to think she’s now older than her big sister.
`Every birthday I’m another year older than my big sister, which is something nobody obviously sees happening, but she has a special place in all of our hearts,` said Tolosky. `We went through 22 years together with this weird bond that we never knew existed, and now whenever I go for a cardiac check up twice a year or feel my ICD for a moment, it’s such a connection to her.`
At the Heartoberfest, Tolosky said everybody likes to reflect on favorite Christie moments.
`She was very social, loved being around people and would have spent every day with family and friends if she could have. She loved animals, had two cats that were like her babies, and she would have loved to one day own a horse. I know she would have been an incredible mother,` said Tolosky. `She loved to run and ouor dog slept with her every night; she was like an animal whisperer.`
Tolosky said her father recently shared a moment with his daughter that he’ll never forget.
`My father was an alumni of Siena College and she went there as well. He was at work when she came into his office so proud, with the letter of acceptance to show she was going to go to his alma mater,` ssaid Tolosky.
`Christie’s Heartoberfest` is at 1 p.m. and all proceeds benefit SADs Foundation, which raises awareness by holding conferences and telling school nurses, coaches and pediatricians about the condition. There will be food, drinks, an auction and raffles. Previous events have raised more than $75,000. For more information visit www.christiesheartoberfest.com or www.StopSADS.org.
“