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    Sunday, May 05, 2024

    Old Lyme community welcomes 'honorary guest' with sirens, horns and bells

    Ray Thomas carries his son RJ, 15, into a donated vacation home Tuesday, June 1, 2021, in Old Lyme. Community members and first responders came together to organize a vacation parade for RJ, who has a terminal illness, and his family, who will be spending several days at a donated vacation home in the Hawks Nest Beach neighborhood. (Sarah Gordon/The Day)
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    Old Lyme — The discordant wail of sirens from police cruisers, firetrucks and ambulances started at Exit 70 off Interstate 95, continued along Route 156 and reached a fever pitch at Columbus Avenue on Tuesday morning, as the parade of vehicles responded not to an emergency, but a call for support.

    The procession delivered RJ Thomas, a 15-year-old from Southington with a rare genetic disease, to the vacation home at Hawks Nest Beach gifted to his family for eight days by owner Ewa Ciaffaglione. Their arrival had been announced by the Old Lyme Police Department to encourage community participation in welcoming the guests.

    It all started when Ciaffaglione, also of Southington, posted on a community Facebook group asking people to stop to say hello if they saw RJ and his family around town. She also sought donations to make their time there "a little more special." That's where the town's emergency responders got the idea for the escort.

    Resident State Trooper and Troop F community trust liaison Matt Weber described RJ as the town's "honorary guest."

    "We want to show him the community welcomes him," Weber said.

    Along the route were supporters like Erin Cormier of East Lyme, who was inspired by RJ's story as shared by the family through social media.

    "I kinda figured he's not going to be here for that long, but while he's here, we can make it good," she said.

    Debbie Noddin, a longtime summer resident, was parked in a golf cart on a grassy median with Eileen Nicoletti and Debbie Callanan.

    She said Weber told them about the procession while they were on a walk earlier that morning.

    "I've been here 40-something years and I've never seen anyone get welcomed like that," she said. "I think it's wonderful."

    The Thomas family SUV, with one cruiser in front and a long line of emergency vehicles behind, arrived about 11:30. Groups of people stood along the route — some with signs, some with bells — all of them waving to the boy whose parents say he has less than two years before a deteriorating condition takes away what's left of his quality of life.

    With the larger trucks turning off at Liberty Street, some cruisers and the Thomas contingent continued a few houses down to the family's temporary home away from home. Parents Ray and Heather, along with sister Natalie, helped RJ out of the car and into the wheelchair he's been in for about two years due to an inherited form of encephalopathy, or brain condition, called Aicardi-Goutieres syndrome.

    An Old Lyme Rangers golf cart, decked out in balloons, was parked in front of the house during a brief community introduction. RJ clutched a bright orange plush toy as a source of familiarity amid all the new faces. His parents weren't too sure what to do with the attention, either.

    Old Lyme police Officer Wayne Collins gave RJ a police hat, a ranger hat and a red gift bag filled with beach items including beach toys, water guns and sunscreen. Weber brought out police K-9 Tazz so RJ could pet him. Then there were cheers, claps and the ringing of bells as the crowd joined in the welcome.

    With teary thanks from Ray and Heather, Weber bowed out.

    "All right, start your vacation, guys," he said.

    Members of the Rangers, a beach version of a youth police cadet program, helped Ray carry RJ up the front steps and assisted Heather in getting the wheelchair in the house. The effort also drew in Old Lyme public works employee Ben Carroll, who immediately started making calls to get a ramp installed.

    Ray told Carroll that Ciaffaglione had offered to provide a ramp, but the Thomas family had been hesitant to put her out when they could just carry RJ up the stairs.

    By that afternoon, a ramp had been set up over the front steps. Heather credited the public works department, the networking of WFSB New London bureau chief Kevin Hogan, and the support of Phil Pavone, a Norwich businessman. Pavone is known for his work providing wheelchairs to those who need them.

    Ciaffaglione, who was unable to attend the event due to work commitments, was represented that morning by her daughter, Maya. The younger Ciaffaglione said her mother's efforts to do something special for the family "just blew up" once the call went out on social media.

    The families have known each other ever since her brothers attended elementary school with RJ, according to Maya.

    "Photo shoots, baskets, gift cards, beachwear," she said, listing the types of donations that had been pouring in over the past week. "It's such a nice little tight-knit community."

    After the crowds dispersed, Ray and Heather talked about their gratitude for the community support.

    "It just shows how amazing people are," Heather said. "Like, complete strangers are coming together for someone they don't even know."

    RJ's parents said his rare disease, which was diagnosed only a few years ago in the aftermath of a trip to the Mayo Clinic in Minnesota, has caused a host of autoimmune disorders including arthritis, thyroid problems and calcium deposits on his brain and heart.

    Ray illustrated the progression of the disease with the image of his son running and tackling a snowman just five years ago.

    "He was 95% a normal kid in 2016," he said.

    Now, RJ cannot walk. He has difficulty talking and sometimes breathing. And the most significant of his ailments affects his heart.

    The couple said doctors have told them that open heart surgery to fix a compromised valve would likely leave their son permanently confined to a hospital bed. They said they talked over the options with RJ and decided to forgo the surgery in favor of enjoying the time they have to spend with him while he can still enjoy it.

    Doctors estimate a year or two until a major cardiac event greatly diminishes his quality of life or possibly kills him, according to Ray and Heather. They said gifts like the trip to the beach and the support of so many in the community are important, as they leave the family with memories they will need when things get even tougher.

    It's an experience that reinforces how much "happiness and love is around him in whatever time we have left with him," Heather said.

    It's also an opportunity to check some boxes off their so-called "Cheeseburger List" of items and activities they want to share as a family of four.

    The name originated when Ray's aunt, who was on her deathbed, asked for a cheeseburger. So he got her one. Now, that fast food staple is the family's shorthand for all the things RJ wants that his parents and sister are determined to provide for him.

    The couple credited their belief in God with helping them through their son's health struggles.

    "Today's an example how that boy can touch people and change their lives and change their viewpoint and change their perspective," Ray said. "There's no doubt in my mind there's something divine there."

    e.regan@theday.com

    Heather Thomas pushes her son RJ, 15, to their donated beach house Tuesday, June 1, 2021, following a parade to welcome the family to Old Lyme. Community members and first responders came together to organize a vacation parade for RJ, who has a terminal illness, and his family, who will be spending several days at a donated vacation home in the Hawks Nest Beach neighborhood. (Sarah Gordon/The Day)
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    Neighbors, from left, Debbie Noodin, Eileen Nicoletti, both of Old Lyme, and Greg Cormier and his daughter Erin of East Lyme gather to cheer on RJ Thomas and his family as they arrive at a vacation home Tuesday, June 1, 2021, in Old Lyme. Community members and first responders came together to organize a vacation parade for RJ, who has a terminal illness, and his family, who will be spending several days at a donated vacation home in the Hawks Nest Beach neighborhood. (Sarah Gordon/The Day)
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    Officer Wayne Collins of the Old Lyme police leads a round of applause as RJ Thomas and his family arrive Tuesday, June 1, 2021, at the vacation home in Old Lyme, where they will be staying. Community members and first responders came together to organize a vacation parade for RJ, who has a terminal illness, and his family, who will be spending several days at a donated vacation home in the Hawks Nest Beach neighborhood. (Sarah Gordon/The Day)
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    Officer Wayne Collins of the Old Lyme police shakes hands with Ray Thomas on Tuesday, June 1, 2021, after his family arrived at their vacation home in Old Lyme. Community members and first responders came together to organize a vacation parade for RJ, Ray's son, who has a terminal illness, and his family, who will be spending several days at a donated vacation home in the Hawks Nest Beach neighborhood. (Sarah Gordon/The Day)
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