Confident, outgoing, and engaging, when you meet her it’s easy to imagine Bethel High School sophomore Celine Pereira talking to young people about a heady topic like heart disease.
Ahead of her family’s vacation on Long Beach Island, Celine Pereira carved out time to talk to The Bethel Grapevine about the advocacy work she’s been doing to encourage kids and youth to keep active and prioritize their heart health. Her mother, Dawn Day, joined the conversation on Zoom.
For most of the youth Celine educates, heart disease is unlikely to affect them until they’re much older. But the 15-year-old has had to be vigilant about her heart health because she was born with a congenital heart condition known as Tetralogy of Fallot. This birth defect affects normal blood flow through the heart and happens when a baby's heart does not form correctly as it grows and develops in utero.
Before age one, Celine had undergone three heart surgeries to repair various defects: at one week of age, she had valvuloplasty; at five months she had her first open-heart surgery; and that same year she had a shunt inserted for six months until she was old enough to receive a full open-heart repair.
Because she was also born with Type 1 Diabetes, during those six months with the shunt, Celine was given blood thinners to prevent clotting. She lived in and out of Maria Ferrari Children’s Hospital in Valhalla, NY, her entire first year.
At the age of 11 months, weighing just 12 pounds, she had a complete repair in a surgery that lasted over 12 hours.
Celine Pereira brings her knowledge about leading a heart-healthy lifestyle to students at Bethel Public Schools. Her fundraising efforts for Kids Heart Challenge (formerly Jump Rope for Heart) at Johnson Elementary School raised over $30,000 this past year and over $20,000 in previous years, placing Bethel School District high in the national fundraising numbers, said Wellness Teacher/K-12 Health Coordinator Nat Claridge Johnson.
Since age 10, Celine has been an advocate for the American Heart Association (AHA) and was appointed American Youth Heart Ambassador. In that role, she helps organize, promote, and celebrate fundraising events. In addition to raising money for important research, her advocacy impacts students on a more personal level.
Working with Kim Fazio, Director of Youth Market for the AHA, Celine has made videos that have been shared with schools around the country and has spent the past five years touring schools and sharing her story to help raise money for babies, kids, and adults who have heart conditions.In addition to having a “tremendous impact” on other students’ fundraising efforts, through sharing her story Celine puts a “face to the mission,” Claridge said.
For younger students, hearing a real-life story from a high schooler in our town makes them more dedicated to fundraising efforts, Celine said.
Her story carries a message of resiliency that benefits her peers and demonstrates that “everyone is different,” making the school a more inclusive place, especially for students with other medical conditions, Claridge said.
“The impact Celine makes is tremendous. The town is lucky to have such a confident, brave advocate and her awesome family.”
“As a mother, you hope to have a healthy child first and foremost. Halfway through my pregnancy, it was clear something was wrong. The technology in 2008 was not as sophisticated to discover the issues which resided. While I was being watched closely, her heart was beating at a good rate, she just wasn’t growing and her movement continued to lessen. She was born in Danbury Hospital at 36 weeks and was immediately transferred to a hospital that could perform the surgeries Celine needed. The unique part about Celine, due to her being so tiny, the journey of her repairs continued through her first year of life. While many children born with Tetralogy of Fallot have their surgeries soon after birth, we had to wait for her tiny heart to grow a bit. In her first surgery she (weighed) only four pounds. Her shunt was placed when she was six pounds,” mother Dawn Day said.
Now a healthy teenager, Celine faces the future of several more surgeries.
“My heart has been showing strain for the past three years, however, once I have another open heart to replace all my valves, it begins a time clock. My Cardiologists are trying to wait until I’m fully grown to do so. Once I receive all new valves, I will then need them replaced every three to five years and that’s a time clock which will continue for the rest of my life,” she said.
At birth, “I was very, very tiny due to all the complications in my body so this made my care unique and scary for my family. Many people think a heart condition can’t happen to a baby, child, or young adult. Well, I’m living proof,” she continued.
Celine said she was treated by “amazing technology and doctors” and credits this care for her being here today. She calls herself a “heart warrior” and said she knows when her next surgery comes, she will be stronger and ready.
Because of her heart's repairs, she is just like other youth her age, Celine said.
“In addition to speaking to the kids about my journey, which makes it a real-life thing meeting a young adult who has had several surgeries, we focus on heart health. This is an effort to teach children at a young age the importance of a healthy lifestyle, exercise, and eating right,” said Celine.
“Funds raised in Connecticut by our passionate volunteers and supporters bring our mission to life by supporting education and research for better heart health. In Connecticut alone, the American Heart Association currently funds $7,199,537 through 40 research studies. We are so appreciative of Celine’s tremendous dedication as a Youth Ambassador for the past five years and fundraising efforts since she began supporting Kids Heart Challenge at age 10,” said Kim Fazio. The funds raised in Bethel will “help save lives right here in Connecticut.”
In addition to her work for AHA, Celine has achieved her Silver Award in Girls Scouts and is now aspiring towards her Gold Award, the equivalent of an Eagle Scout. This is a lengthy process requiring service to a cause or community enhancement. Additionally, she teaches religion at St. Mary’s and volunteers for the annual Scotty Fund Gala in Bethel. She also sings and takes voice lessons, serves as a mentor for the youth choir at her church, and recently became a cantor with the adult choir. She loves theater, golfing, hiking, and spending time with friends, whether walking in town, shopping or going out for karaoke.
“In the near future, I plan to advance my advocacy for the American Heart Association; I plan to continue helping children learn about heart health and I hope that with my message and my efforts, more children will live a healthy lifestyle and encourage their families to do the same,” Celine said.
Her mother shared her hopes for her daughter's future.
“To empower people of all ages to see that while you have setbacks, you can brush your shoulders off and press on. Climb that mountain, don’t let a disability hinder you. Look towards living your best life and doing what you can to help others. If anything, she is teaching children the importance of a healthy lifestyle. Genetics for heart disease do play a role, but for someone like Celine, it was a mutated gene that caused her heart defect. She can sit back and allow it to define her or she can take lemons and make lemonade. We chose a journey that is filled with positivity, happiness, and love. And that defines Celine,” Day said proudly.
We at Bethel Grapevine are proud of Celine too. Thanks for everything you do to make the world a healthier place, Celine!