At 14 years old, Kiersten Rock-Torcivia was gliding across the ice, figure skating when her vision suddenly faded to black and her heart went into an arrhythmia.
At 16 years old, Rock-Torcivia became one of an exceedingly small group of people diagnosed with the gene contributing to her condition, Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC).
“The gene that I have—the mutation—I believe I’m one in eleven people that have been discovered,” Rock-Torcivia, CSON ’27, said.
ARVC is a combination of two typically distinct heart conditions: arrhythmia and heart tissue inflammation. The process of getting this condition diagnosed lasted over a year following the skating incident, Rock-Torcivia said.
“It’s more of a rare disease to see both components of the heart disease together,” Rock-Torcivia said. “It’s definitely a weird way to have the condition. That’s why diagnosis took a lot longer.”
After finding out about her diagnosis, Rock-Torcivia started Heartfelt Harmonies, a nonprofit committed to helping other kids with heart disease. The initiative started, she said, from an abundance of free time following he first heart surgery—during which she went into cardiac arrest.
“That first surgery was ten days before COVID,” Rock-Torcivia said. “So basically like, school stopped, and then skating stopped, and then I was like, now what do I do with my life?”
During this time, Rock-Torcivia said she and her family grew increasingly connected to the heart disease community. As she got to know more people’s stories, Rock-Torcivia said she became aware that her experience was not entirely unique.
“I kind of realized that … all of these emergency hospital situations, they’re not rare at all,” Rock-Torcivia said. “You don’t really realize how stressful they can be until you’re in them three or four times, and for prolonged periods of time.”
With no shortage of time on her hands, and with a newfound understanding of other heart disease survivors, Rock-Torcivia decided to make an active difference in her community.
Remembering how music got her through countless nights in the emergency room, Rock-Torcivia started making music therapy kits—small bags with earbuds and Spotify playlist codes to give to younger patients.
“There were nights where I was just sitting in the ER all night,” Rock-Torcivia said. “And in an ER, it’s kind of impossible to get sleep or breathe and relax, so I started out my charity doing music therapy kits.”
Soon after she started distributing them around hospitals, the music therapy kits became a big success, Rock-Torcivia said. As the project started to pick up, she began calling her charity “Heartfelt Harmonies.”
“So I was putting together all of these kits, and there was an overwhelming amount of support from the community,” Rock-Torcivia said. “I started having way more donations than I knew what to do with.”
With all of the new cash flow, Rock-Torcivia said she wanted to expand Heartfelt Harmonies. She eventually landed on raising money to purchase and distribute automated external defibrillators (AEDs)—devices used to regulate heartbeats during cardiac arrest.
The idea stemmed from her family’s troubles getting the cost of her AED covered by insurance, Rock-Torcivia said. Before she had surgery to get an internal defibrillator, Rock-Torcivia’s doctor recommended that her family purchase an AED.
According to Rock-Torcivia, AEDs cost around $1200, and their insurance didn’t cover the cost until around eight months after the purchase.
“Luckily, my family is well off enough that that wasn’t really a burden for us, and my mom also has the time in her schedule where she was able to fight with insurance to actually get them to approve it,” Rock-Torcivia said. “But I kind of realized that that is so not the case for everyone, and I very much had an advantage.”
Rock-Torcivia started reaching out to doctors to connect with families who weren’t able to afford their AED, but because of HIPAA restrictions, doctors were unable to give her any contact information, she said.
Faced with a dead end, Rock-Torcivia said she switched focus to working with youth athletic organizations instead. The idea was inspired by her history of figure skating and the fact that arrhythmias are often triggered during exercise, she said.
“I landed on this idea of donating AEDs to organizations that work closely with youth, especially in a more athletic manner,” Rock-Torcivia said.
Michelle DePascale, Rock-Torcivia’s high school guidance counselor, highlighted Rock-Torcivia’s compassion and said Rock-Torcivia cares deeply about the needs of others.
“She’s a really compassionate, kind, giving individual, which is why she’s doing what she’s doing,” DePascale said. “Like I said, she’s very selfless because she was going through all of this and yet she was thinking, ‘Well, what can I do for others?’”
A couple of months after her first AED donation, Heartfelt Harmonies became an official 501(c)(3) nonprofit organization. As it continued to expand, Rock-Torcivia said the organization started to focus more on AED fundraising and distribution than music therapy kits.
“Typically, the rule with an AED is that you want to be thirty seconds from any point in the building from an AED,” Rock-Torcivia said. “Because the quicker you get an AED, the higher the survival rate.”
With Heartfelt Harmonies, Rock-Torcivia said she hopes to do her part in ensuring more people are within the recommended distance of an AED.
“I believe that AEDs should be mandated to be everywhere, especially pools, sports fields, dance studios, different things like that,” Rock-Torcivia said. “But they’re not even necessary in every public school. Some states have those laws, but not every state.”
When donating AEDs to youth organizations, Rock-Torcivia also said she intentionally targets underprivileged communities.
“Since they don’t have equitable healthcare, there’s less of a chance that those kids will get the heart screenings that they need, and therefore more of a chance that something will happen to them,” Rock-Torcivia said.
Additionally, through her experience speaking with heart-disease survivors, Rock-Torcivia said she learned that situations of sudden cardiac arrest can happen to anyone, anywhere, and even without prior signs.
“I’ve unfortunately met a lot of people, and sadly, a lot of parents, who have lost their kids to cardiac arrest,” Rock-Torcivia said. “It’s such a large issue, and no one really realizes it until it affects someone you know or someone in your school or in your town.”
One of these people is JoAnne Babbitt, who lost her son to cardiac arrest in 2006 and subsequentally started the John Taylor Babbitt Foundation in his name, alongside her husband.
According to Babbitt, the John Taylor Babbitt Foundation and Heartfelt Harmonies have the same goal: get as many AEDs as possible into places of public assembly.
“Your chances of survival, without using an AED and someone doing CPR, are about 7 percent,” Babbitt said. “Starting CPR within minutes and using an AED within minutes—your chances of survival increase to anywhere from 50 to 70 percent.”
Because of this statistic, Babbitt said Heartfelt Harmonies is doing vital work.
“Bottom line: you don’t have time to wait for the ambulance to arrive,” Babbitt said.
In addition to running Heartfelt Harmonies, Rock-Torcivia said she is also passionate about patient advocacy. At an event hosted by the John Taylor Babbitt Foundation, she was given the opportunity to share her story with an audience.
“The audience … hung off of every word she said,” Babbitt said. “And that’s because her story is compelling, you know, how many times she has skirted death.”
Now, Rock-Torcivia continues to run Heartfelt Harmonies on top of studying to become a nurse. Though she has always been interested in the sciences, Rock-Torcivia said her experiences in hospitals made her more interested in healthcare.
“I landed on nursing because I think they just kind of have a very special connection with the patient,” Rock-Torcivia said. “They get that face-to-face and that emotional connection.”
Through both Heartfelt Harmonies and her future career as a nurse, DePascale said that Rock-Torcivia’s most inspiring trait is that she strives to help others despite her own personal challenges.
“It’s hard for a teenager to have to stop doing the sport they love … and going through a multitude of procedures, being in a highly competitive academic program, and yet, here she is still saying, ‘What can I do for someone else?’” DePascale said.
