{"id":3822,"date":"2023-12-01T14:46:45","date_gmt":"2023-12-01T19:46:45","guid":{"rendered":"https:\/\/www.syracusewomanmag.com\/?p=3822"},"modified":"2026-02-01T14:40:29","modified_gmt":"2026-02-01T19:40:29","slug":"special-feature-the-ultimate-gift-life","status":"publish","type":"post","link":"https:\/\/www.syracusewomanmag.com\/?p=3822","title":{"rendered":"Danielle Fiorello advocates in memory of her sister"},"content":{"rendered":"

D<\/p>\n

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.\u00a0<\/span><\/p>\n

Danielle became involved with the Heart Walks fundraiser for\u00a0<\/span>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\u00a0<\/span>issues with the heart\u2019s electrical system, prolonging the interval between beats.<\/p>\n

\u201cThere was nothing that told us something was wrong,\u201d Danielle said. \u201cShe was perfectly healthy.\u201d\u00a0<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

According to the We Love NikkyBoots team page written by the Fiorello family, \u201c[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.\u201d<\/p>\n

The second incident was years later, when living in Brooklyn.\u00a0<\/span><\/p>\n

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\u2019s 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.<\/p>\n

\u201cIt was really a shock. We had no idea what happened.\u201d\u00a0 <\/span>Danielle said.\u00a0<\/span><\/p>\n

There are three types of LQTS, distinguished by the different genes that are mutated. Nikky had the third type \u2013 LQTS3, meaning her affected gene was the SCN5A, which controls the heart\u2019s 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).\u00a0<\/span><\/p>\n

\u201cIt was like a freak accident,\u201d Danielle said. \u201cIt 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.\u201d\u00a0<\/span><\/p>\n

After learning the disorder stemmed from genetics, the Fiorello family had to maneuver through \u201call of the hoops\u201d and get themselves genetically tested for the mutation. Through this, they discovered Danielle\u2019s father has it. Thankfully, he is through \u201cthe danger zone,\u201d\u00a0<\/span>as the average age of death from the condition is 30.<\/p>\n

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\u2019s mother Kate began the family\u2019s Heart Walk team, We Love NikkyBoots, recruiting family and\u00a0<\/span>friends to participate and donate. The walk raises funds for research into cardiovascular issues. In the family\u2019s first year, over $40,000\u00a0<\/span>was raised.\u00a0<\/span><\/p>\n

\u201cGetting involved with the walks encouraged me to try and adjust\u00a0<\/span>to this new me. I want to share this information so we can make\u00a0<\/span>others aware about heart disease and Long QT,\u201d Danielle said.\u00a0<\/span>\u201cMy main goal is to spread awareness \u2013 how can I contribute to\u00a0<\/span>make an impact?\u201d<\/p>\n

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\u2019s involvement has helped Danielle to raise more money and bring awareness to the community.\u00a0<\/span><\/p>\n

\u201cI send out emails and we will have events that help, too,\u201d Danielle said. \u201cOne year we had a golf fundraiser. Each putt was a pledge.\u201d<\/p>\n

Walk days for Danielle tend to be bittersweet. From hearing the\u00a0<\/span><\/p>\n

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. \u201cIt keeps me grateful. I\u2019m very lucky in my life to have the support that I do,\u201d she said.\u00a0<\/span><\/p>\n

Even years after losing her sister, there are still many difficult times. When these happen, she does her best to honor her sister\u2019s memory\u00a0<\/span><\/p>\n

by taking action. \u201cI can\u2019t spend all day with sadness. Going out and doing something meaningful like this is important to me,\u201d Danielle said. \u201cI 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\u00a0<\/span>to grieve.\u201d\u00a0<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

\u201c[My strength] really surprised me,\u201d she said.\u00a0<\/span>Danielle\u2019s strength continues to grow as she learns more about LQTS\u00a0<\/span>and uses her knowledge to help others. \u201cI want to help people realize that [LQTS] exists. I want there to be a path to understanding.\u201d SWM<\/b>\"\"<\/a>\u00a0<\/span><\/b><\/p>\n","protected":false},"excerpt":{"rendered":"

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.\u00a0 Danielle became…<\/p>\n","protected":false},"author":1,"featured_media":3823,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[4],"tags":[1518,1525,1526],"class_list":["post-3822","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-special-feature","tag-november-2023","tag-organ-donation","tag-organ-donor"],"gutentor_comment":0,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2023\/12\/DSC02113-scaled.jpg?fit=2560%2C1707&ssl=1","jetpack_sharing_enabled":true,"jetpack-related-posts":[{"id":3486,"url":"https:\/\/www.syracusewomanmag.com\/?p=3486","url_meta":{"origin":3822,"position":0},"title":"Remembering Nikky Fiorello: The Rhythms of an Unforgettable Woman","author":"Alyssa Dearborn","date":"February 8, 2023","format":false,"excerpt":"By Kate Hanzalik Brilliant dancers feel the rhythm in their bodies. 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