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Event:
Sunday, April 14th
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Team Coach:
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Company Affiliation:
We Love NikkyBoots
26 Members
Fundraising Progress
$13,095.62
Fundraising Goal
$2,500
We Walk to Save Lives!
2024 Syracuse Heart Walk
We Love NikkyBoots
Team We Love NikkyBoots comes together in loving memory of our daughter, sister, friend, Nikky Fiorello to raise awareness of a condition that can cause a sudden and unexpected death.
We hear a lot about heart health. We know it's important to eat well to keep the arteries clear and to exercise to keep the heart muscle strong. But there is another equally important component to heart health - the electrophysiological part. The heart receives an electrical impulse to keep it beating, and many things have to be in place for this to occur; proper hydration, the right levels of sodium and potassium, etc.
The absence of this electrical impulse can lead to sudden death. Sudden death syndrome is a loosely defined umbrella term for a series of syndromes that cause sudden death by cardiac arrest. One of these is congenital Long QT syndrome (LQTS). People with LQTS may be at greater risk when they exercise (LQT1), when they have an adrenaline rush (LQT2) or when they are asleep (LQT3). LQT3 comprises approximately 5%-10% of LQTS.
Our dear Nikky died of sudden cardiac arrest, presumed to have been caused by LQT3. This is our effort to raise awareness of this condition. Here is Nikky's story written by her mom:
On January 7, 2020 Nikky was found dead on the bedroom floor of her Manhattan apartment. She apparently collapsed as she got out of bed and lifted her arms to remove her pajama top. Since the medical examiner could find nothing wrong, she ordered genetic testing. The results showed that Nikky had a variant in the SCN5A gene, whcih controls the sodium channels to the heart. This variant, combined with other conditions (perhaps being dehydrated from a kickboxing class the night before or being prescribed a medicine with the warning "caution with prolonged QT"), likely caused a Long QT interval; the timing of the electrical impulse was off, and her heart didn't beat.
Driving back from that most awful trip to NYC in January 2020, we remembered two prior health incidents in a new light. Ten years earlier, when Nikky was a senior at SUNY Albany, we got a call that she was at Albany Medical Center. A friend had called 911 when Nikky wouldn't wake up in the morning, her eyes rolled back into her head. By the time the EMTs had arrived, Nikky was awake. When we got to the hospital she said that it was "crazy that I'm in the hospital, I am fine." The doctor said she had some type of seizure. Being a holiday weekend, they wanted to keep her until Tuesday for tests. But on Tuesday the doctors said too much time had passed for the tests to be of any value. My guilt - why didn't I follow up to ask "what were you going to test for?"
Five years later, Nikky called one morning from her apartment in Brooklyn, "Mom, I just woke up on the bathroom floor. I must have passed out on the way to the shower." She asked "do you think something could really be wrong with me?" My guilt - I said "you should ask your doctor, but you know, that happened to dad a few years ago."
After Nikky's cause of death was identified, our family was prescribed genetic testing (a simple swab of the cheek from a mail in kit). My husband also has the variant. They say relatives should get cardio and genetic screening in cases like Nikky's, but that appears easier said than done. A family member has been desperately tryng to get screened since her child experienced a seizure episode similar to the one Nikky had in college. She has thus far been unable to get a prescription for the genetic test, only appointments for cardiac testing. But if the condition Nikky had only presents during rest, will a stress test disclose the problem?
We hope that by sharing our story, we have increased your awareness of LQTS. Had we been aware of the existence of this condition, maybe we could have prevented our beautiful, articulate, passionate daughter from dropping dead at age 30. We miss her so.
Team Roster
Raised
$6,377
$50
$100
$25
$1,000
$165
$432
$25
$482
$818
$400
$100
$50
$50
$100
$250
$200
$100
$204
$25
$100
$100
Team Gifts
$1,789
![Team captain](../images/friendraiser/icon_TeamCaptain.png)
Denotes a Team Captain
Team Progress
of Goal
$13,095
Raised
$2,500.00
Team Honor Roll
Nancy Payne
$4,000
Cornelius Colao
$1,000
Terry, Judy and Kathy from AT&T
$300
david riva
$257
Marj & Dave Taylor
$250
Jasmine (Shergill) Fields
$250
Michelle Vita
$250
Martha Riva
The MacLean Family
$250
Michele Marlow
$250
Paige Marsteller
$200
Chrysanthi Jaffe
$154
* BlackRock (MG)
$154
Julie & Stephen
$154
Megan O'Rourke
$154
Cindy Nagle
$154
Anthony Fiorello
$154
Madison Rittenhouse
$150
David Marzullo
$150
The Dumigans
Nancy & Anthony Crisalli
$128
Stephanie BNP
$103
Danielle Fiorello
$103
Steve and Sandy
$103
Dennis & Valerie Hayes
Sharon Powell BNP
$103
Aunt Patricia
$103
Emily Discenza
$103
Cheryl Rhodes
$103
Zach H
$103
Chrysanthi Jaffe
$103
Nancy Tran
$103
Nick Della Pelle
$103
Kevin Cartini
$103
Nicole Schunck
$100
Lori Alexander
$100
Dominic Fiorello
$100
Courtney Groth
$100
Vanessa Fitch
Derry Micale
$100
Paul Linnertz
$100
Doreen Dengos
$100
Rick/Ruthie Della Pelle
$100
Katie Cassetta
$100
Catherine Fiorello
$100
Laurie Dombroff
Dave and Marj Taylor
$77
harriet weiner
$77
Linda Hagan
$77
Jesse Whittaker
$75
Wendy S
Ozzie Jr
$75
Shannon Dengos
$52
Ashley
$51
Deb Saure
Dave & Lori Legonelli
Tucker Sholtes
$51
Ross Insalaco
$51
Danielle Pompili
$51
Linda Mniece
$51
Jason LoVullo
$50
Bob&MaryAnn Romano
$50
Therese M Stimson
$50
Karen Jacobson
$50
* Apple Inc. (MG)
$50
Janelle Jacobson
$50
Danny Petzoldt
$50
Jim Alexander
$50
Leanne Nagle
$50
Keriann Dengos
$31
Michael Walsh
$31
Alyssa DeBellis
$31
Kara Cumoletti
$31
Carli Bryden
$30
Corina Miller
Rachael Seth MT Braddock
$26
Anonymous
$26
Jayden Burdick
$26
Zach Dengos
$26
Katy Mastrocola
$26
Donna Mastrocola
$26
Casen Chavez-Egan
$25
Sarah Nagle
$25
Lori Lake
$25
Rick & JoLee Olszewski
$25
Jayden Burdick
$25
Keriann Dengos
$25
Top Donors
Nancy Payne
Cornelius Colao
Terry, Judy and Kathy from AT&T
david riva
Marj & Dave Taylor