D
anielle Fiorello did not expect the loss of her sister to transform her into the bright and passionate heart health advocate that she is. Today, she brings her knowledge and compassion into every part of her personal and professional life through her work with the Syracuse Chapter of the American Heart Association.
Danielle became involved with the Heart Walks fundraiser for the American Heart Association after the sudden passing of her sister. Nikky, who was just 30, had Long QT Syndrome (LQTS), which was unknown to her and her family at the time. LQTS is a heart rhythm disorder that is inherited through genetic mutations. It creates issues with the heart’s electrical system, prolonging the interval between beats.
“There was nothing that told us something was wrong,” Danielle said. “She was perfectly healthy.”
The only symptoms (fainting, seizures and palpitations) the family knew Nikky experienced had been years earlier in two separate events. When they happened, neither was followed up on. Her first incident happened when she was a senior at SUNY Albany. She did not wake up on a Saturday morning, sparking concern from a friend. By the time emergency services had arrived, Nikky was awake and alert.
According to the We Love NikkyBoots team page written by the Fiorello family, “[The doctors at the hospital] wanted to keep her until Tuesday for tests. But on Tuesday, the doctors said too much time had passed for the test to be of any value.”
The second incident was years later, when living in Brooklyn.
She had fainted suddenly on her way to the shower. While odd, it did not spark her to pursue any medical diagnosis. With the disorder’s rarity, LQTS is often overlooked as a potential diagnosis unless the individual is given an echocardiogram or Holter monitor. For many, it is unknown that they have it until after they have passed. Unfortunately, this included Nikky.
“It was really a shock. We had no idea what happened.” Danielle said.
There are three types of LQTS, distinguished by the different genes that are mutated. Nikky had the third type – LQTS3, meaning her affected gene was the SCN5A, which controls the heart’s sodium channel. This meant she was at risk when she was resting, sleeping or had a slow heart rate. The first two types are triggered by physical exercise (LQTS1) and emotional stress or loud noises (LQTS2).
“It was like a freak accident,” Danielle said. “It was important for us to know if any of us had [LQTS] and genetic testing was the way we had to go. After that, we really started to tell our friends, other relatives and neighbors about it. It could really have been anyone.”
After learning the disorder stemmed from genetics, the Fiorello family had to maneuver through “all of the hoops” and get themselves genetically tested for the mutation. Through this, they discovered Danielle’s father has it. Thankfully, he is through “the danger zone,” as the average age of death from the condition is 30.
In their grief, the family dedicated themselves to learning more about the condition that claimed their beloved Nikky and finding ways to help educate others. Danielle’s mother Kate began the family’s Heart Walk team, We Love NikkyBoots, recruiting family and friends to participate and donate. The walk raises funds for research into cardiovascular issues. In the family’s first year, over $40,000 was raised.
“Getting involved with the walks encouraged me to try and adjust to this new me. I want to share this information so we can make others aware about heart disease and Long QT,” Danielle said. “My main goal is to spread awareness – how can I contribute to make an impact?”
Now, Danielle heads the walk for her family and her place of employment, The Bonadio Group, where she is also the chair of the wellness committee. The firm’s involvement has helped Danielle to raise more money and bring awareness to the community.
“I send out emails and we will have events that help, too,” Danielle said. “One year we had a golf fundraiser. Each putt was a pledge.”
Walk days for Danielle tend to be bittersweet. From hearing the
stories of survivors to kick off the event, to seeing the number of friends and family that gather to participate and donate makes her emotional. “It keeps me grateful. I’m very lucky in my life to have the support that I do,” she said.
Even years after losing her sister, there are still many difficult times. When these happen, she does her best to honor her sister’s memory
by taking action. “I can’t spend all day with sadness. Going out and doing something meaningful like this is important to me,” Danielle said. “I have good role models. My parents are involved with grief groups and continue to do research. Through this, I see that everyone has their own way of grieving. I have learned that there is no right way to grieve.”
Participating in the walks is something that helps Danielle through her grief. She finds purpose in the work she does and is grateful for the support of her family. While you never know how you will react to a sudden loss, Danielle never would have predicted that she would come out the other side as strong as she is.
“[My strength] really surprised me,” she said. Danielle’s strength continues to grow as she learns more about LQTS and uses her knowledge to help others. “I want to help people realize that [LQTS] exists. I want there to be a path to understanding.” SWM
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