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09/25/2019 08:30 AMMelanie DeCaprio was still studying nursing when she first offered to help out brother and sister Sam and Alex Bode and their mom, Mary Caruso. One nursing degree and nine years later, Melanie is sticking with this remarkable family, and still doing her utmost to help.
The North Branford siblings need daily assistance as they navigate the world while living with Friedreich’s ataxia (FA), a life-shortening, progressive, and devastating disease. Right now, Melanie is working to help Sam, Alex, Mary, and the rest of a small, dynamic group of family friends to offer a fun, fundraising event: Loving Life: A Night of Kindness and Friendship on Friday, Oct. 18, at 6 p.m. at Owenego Beach and Tennis Club in Branford.
The celebration (offering dinner, cash bar, raffle, silent auction, fun, and friendship) will raise funds for national, non-profit Friedreich’s Ataxia Research Alliance (FARA). Tickets, $75 in advance, $100 at the door, are available now on the group’s Facebook page, LovingLifeCureFA or at curefa.org/lovinglife
Melanie brings her nursing background to the family in her work as a personal care attendant and has also been volunteering her time and effort to help the family run programs and events year-round to raise funds for FARA. “Loving Life” is this year’s theme for the group’s biggest annual fundraiser, which has been taking place at the Owenego for the past several years.
“The Owenego is unbelievably generous—they donate the venue, every year,” says Melanie.
The night of celebration always focuses on a theme that centers on positivity and making progress. And, as a well-known provider of delicious baked goods from the heart of her home kitchen, Mary is also a creative type who puts her heart into decorating the event and setting up surprise centerpieces that have become a favorite party favor, says Melanie.
“So it’s just a great night. It’s a night where you’re not only donating, but you’re having fun and really enjoying time spent with some great people—and you’re also leaving with a really positive attitude,” says Melanie. “That’s what Mary is all about—cherishing life, making the most of what you have. Not letting your circumstances get you down, but making the most of it. Treat every day like it’s a gift.”
It’s also an all hands on deck effort, with Alex and Sam putting in a lot of hours to assist. Sam is especially versed at digital media and video production and brings a lot of new elements to the Facebook page, which the group started up about two years ago to keep FARA supporters and family followers updated.
“It allows us to post videos and it allows us to post links for ticket purchases and other items, so it’s been great,” says Melanie. “Last year. Sam did a lot of videos where he was like, ‘These are our raffle prizes!’ and ‘These are the awesome things that we have!’ which people loved.”
“Alex and Sam also worked so hard approaching local businesses,” she adds. “This year, we’ve found some really, really great raffle prizes and donations. People have been amazing, and not only in North Branford, but in Branford and Guilford and Madison, even up towards Hartford, people are donating.”
One reason: This is the one of the only big benefit events in the state—and the region—focused on helping FARA. Even more remarkably, Mary had a hand in helping to found non-profit, nationally based FARA more than two decades ago at a time when little to no research or fundraising was being organized to help find a cure for FA. Sam was diagnosed with FA in 1995, followed by Alex.
As Mary notes, “My first promise in 1995 was that I would always offer hope to my children. This yearly event keeps that hope alive and helps my children celebrate life, surrounded by support from amazing friends and community.”
Mary continues assisting FARA as a member of its board of directors.
“Mary’s tried, every single year since diagnosis, to do something, and there has definitely been progress,” says Melanie.
Funds raised to support FARA assist scientists and researchers from all over the world to do research, then brings them together to share insights that will bring the world closer to a cure. In the last 20 years, many strides have been made, including gains coming from genome research.
For Melanie, the opportunity to assist this special family has been an important part of her life and career. The Guilford resident first learned about the family through her mom, a pharmacist in North Branford who knows Mary and her children.
“My parents grew up in North Branford and they moved as little over the town line as possibly they could. So we live in North Guilford, way closer to the center of North Branford than Guilford,” says Melanie, laughing.
The Guilford High School Class of 2008 alumnae studied nursing for two years at the University of Vermont and finished nursing school in Connecticut. She was still a nursing student when she answered an anonymous newspaper ad looking for, in part, “help from someone who has an appreciation for life and kindness,” as Melanie recalls.
“My mom actually saw the ad first, and she said it just sounded like Mary! And so when Mary came into the pharmacy, my mom asked her, ‘Did you put an ad in the paper?’ And Mary said ‘Yes,’” says Melanie.
Suffice it say, Melanie answered that ad, completed an interview, and got the job. She became one of the family’s special group of several students, nurses, and care attendants who have helped care for the siblings in their North Street home in North Branford through the years.
“We have an amazing group of people, and a lot of students. The student portion is really great, because it allows for a good transition time for not only Sam and Alex, but also the students. So we have local people who go to school away, who come home for summer or winter break, and we have out of state people who go to school—especially Quinnipiac—who come and work during the semesters,” says Melanie.
Most nursing students work with the family for about two years, but for Melanie, the experience has been so significant, she’s stayed on.
“It’s been a great experience, especially in health care, to see things from a patient’s view,” says Melanie. “You learn in school all the theoretical—‘In a perfect world, this is how you’re going to treat; this is how you’re going to function; this is how an office or hospital is going to work.’ But you don’t know until you’re with someone every day to see what it takes.”
Melanie is also using her Guilford connections to help Sam, Alex, and Mary spread the news about supporting FARA beyond their hometown, and hopefully gather support from more local businesses to help make Loving Life a huge success.
“Yes, we want to raise money, but we also want to show people who are attending what businesses in our communities do,” says Melanie. “We’d love to have more contributions of raffle prizes, and we’re trying out our silent auction for the first time this year, so we’re really hoping for some great local donations. We’d love to have the kind that will bring people out into to the community, and draw them back to return to the businesses that support us.”
To make a donation, get event tickets, or for more information, visit LovingLifeCureFA on Facebook.