"It’s very gratifying to help someone else when you know what they’re going through," Flanigan said. "Sometimes it (the foundation) keeps me going. You almost feel helpless, but you make up for it by helping other people."
The second annual Rock for Dillon, begun by West Haven dentist Bill Hylton, who was touched by Dillon’s daily struggles in life, is being put on as part of Horizon Music Group’s 20th anniversary celebration. Toad’s is giving the club for free and the $20 cover charge goes to Dillon’s fund. Raffle prizes include a signed original script from the television show, "Rescue Me," a guitar signed by John Mayer; and a complete smile makeover.
Local bands performing include Gargantua Soul, Mighty Purple, Seth Adam, Saving Echo, Mortal Madness and Hylton’s own group, Dog Faced Boy, which recorded an original song last year about Dillon’s struggle.
Dillon suffers from Type II Collagenopathy, a gene mutation that is a form of dwarfism so rare it affects one in a million people. His case is complicated with respiratory and other health issues not always seen in others with the disease. Dillon has a tube projecting from his neck for breathing, sleeps with a ventilator that’s hooked to alarms, frequently has his airways suctioned and needs lung treatments. He also has skeletal issues that cause pain.
Dillon has been taken from home by Life Star helicopter more than once to Connecticut Children’s Medical Center in Hartford where he’s treated, and 911 calls aren’t a rarity. Someone has to be in the room when he sleeps in case he stops breathing.
Even his hearing, and therefore his ability to speak, is becoming compromised by conductive hearing loss. The family and nurses are encouraging him to start using sign language again.
Vic Steffens, president of Horizon Music Group, said the Dillon Flanigan Foundation is a compelling cause.
"This is a kid climbing a mountain every day bigger than most people do in a lifetime," Steffens said. "They (the Flanigans) have a difficult road, but a positive attitude. It’s hard to walk away from this."
Dillon first won the hearts of Register readers as a toddler when Lauren Flanigan and his dad, Scott, brought a plea to legislators and the public about two years ago when their primary insurance benefits for in-home care of Dillon ran out.
The insurance company was willing to pay $30,000 per month at that point for Dillon to be hospitalized, but not the $20,000 cost of in-home care with his family, including two brothers.
The Flanigans’ case, punctuated by their desire to give Dillon as normal a life as possible, attracted so much attention they eventually received a special waiver from the state for Dillon’s care.
Dillon charmed readers with his huge smile; his mom’s story of how he smiled just as he was resuscitated touched them too.
"He’s becoming a rallying cry for other kids," said Hylton, who also has a chronically ill child.
Dillon, who just turned four, likes to push his miniature trucks and cars across a road of purple Play-Doh at the family’s kitchen table.
He giggles like a carefree pre-school boy and acts embarrassed like any other kid would when his mom plays an air guitar for guests.
Quite smart by all accounts and an extroverted chatterbox at times, Dillon is starting to ask questions about being different and it tugs at mom’s heartstrings.
When he asks his mom why his cousin doesn’t have a tube implanted in his neck for breathing, Lauren Flanigan tells Dillon, "God made you very special."
When Dillon had a recent middle-of-the-night episode of turning blue — a troubling new occurrence that is even stumping doctors — he asked for a mirror.
"I want to see me blue. Why am I blue?" he asked mom.
But Dillon also is playful.
"Bill, you’re silly," he tells Hylton on a recent visit.
Dillon also can be fresh and gets time outs just like his brother, Lauren Flanigan said.
Hylton, who owns Savin Dental Care, said Lauren Flanigan was "outspoken and brazen" in her mission to get care for Dillon and he thinks her helping other parents through the foundation is a next logical step.
Lauren Flanigan said the worst part of all is that there’s no telling what the future holds because there’s no prognosis for the combination of ailments that Dillon has. She is a dedicated mom who goes through the nighttime emergencies with Dillon even though he has a nurse and brings him to appointments with specialists all the time.
Lately, Lauren Flanigan is stressed because of Dillon’s turning blue episodes, strained breathing and racing heartbeat. Common sense tells her Dillon’s getting worse, she said.
"If God wanted to take him he’s had his chance; he wouldn’t do that to me now," Lauren said. "I can’t imagine my life without him; he inspires so many people."
The fund set up for Dillon, to which the Nov. 9 proceeds will go has already helped four families personally and hundreds of sick children through buying asthma equipment, bedding and other supplies for health care centers.
When Dillon becomes more stable, Lauren Flanigan will resume lobbying lawmakers to change some insurance and other rules so no family ever has to lose their job or house trying to care for a sick child, a scenario she’s seen with others. She also wants children like Dillon who need round-the-clock nursing care to get it at home if possible.
One of Dillon’s specially trained registered nurses, Theresia Swazey, said he knows his numbers, colors and has a better vocabulary than most kids his age.
"He’s the kind of kid who has you thinking when you go home, ‘What can I do to help him?’" Swazey said.