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02/03/2021 07:58 AMJames Keating, like so many five-year-olds, loves movies—his favorite is Toy Story—and has yearned for his basement to be turned into a place where he; his brother, Teddy, 10; and his parents, Martine and Eliot, can hang out, eat popcorn, and enjoy their favorite flicks.
But unlike most five-year-olds, Keating suffers from Kabuki syndrome, a rare multisystem disorder that first made itself known when he was in utero. On top of that, last year he was diagnosed with Evans syndrome, in which the body’s immune system turns against itself and attacks its own red blood cells.
“We knew when I was pregnant with him that there was something wrong with his heart,” said Martine Keating. Kabuki syndrome “can attack multiple body systems. We worked extensively with the pediatric rehab outpatient [department] at Yale and the clinicians there to get him to drink from a bottle. It took us about a year. I took that year off [from work] to take care of him.”
Kabuki syndrome affects only one infant in every 32,000 births, Keating explained.
James Keating, along with his heart defects, has double hearing aids due to hearing loss in both ears. He is also quite small for his age.
He has droves of specialists, including “GI, cardiology ENT, and a heart failure specialist up in Boston,” his mom said. He gets treatment at Boston Children’s Hospital, as well, where Olaf Bodamer, a nationally renowned expert in Kabuki syndrome, is associate chief of Genetics & Genomics. Bodamer is also an associate professor at Harvard Medical School.
This year alone, Keating endured nine hospital stays for blood transfusions and weekly, then monthly, infusions of medicine, his mom reported.
Keating’s extensive time in hospitals made movies special to him, she explained. Stuck sitting in a chair or in bed at Yale New Haven Hospital, he’d find distraction and comfort by choosing a DVD from a closet stocked full of them and watching it in his room.
He asked, “‘What if I could have a movie room and be able to watch movies at our house?’” Martine Keating said.
It was one of the social workers at Yale’s Smilow Cancer Center who submitted the application to Make-a-Wish Foundation of Connecticut, she explained, and it was accepted immediately.
Make-a-Wish staff made a concerted effort to make the basement remodel not only about James, but about Teddy Keating, too. Last year, he was diagnosed with Crohn’s disease, which causes inflammation of the digestive tract. The family has since been in and out of the hospital with one or the other of the children.
So the big-screen television, Xbox, popcorn maker, and karaoke machine are for both James and Teddy Keating to enjoy. And among the superhero posters and other decorative touches are both boys’ names in lights.
Making Wishes Come True
Make-a-Wish can’t make life-threatening conditions go away. But it can make other aspects of a kid’s life better. The Connecticut chapter, which is based in Trumbull, brought together LL Flooring (formerly Lumber Liquidators) and other partners to create a basement movie theater at the Keatings’ Clinton home. LL Flooring, which is headquartered in Richmond, Virginia, not only donated the materials for the 475-square-foot space, but the cost of installation.
James Keating went downstairs for the big reveal on Dec. 12. Later that day, to keep everyone safe from the pandemic, a celebratory gathering was held at the Westbrook Elk’s Club in lieu of a party at home.
“The Elk’s Club donated their space and also donated food” for the gathering, said Barbara Vincent, senior wish and program operations manager for Make-a-Wish. “It’s a beautiful space...They made [James] an honorary Elk.
“This was very much a group effort,” she continued. The basement space was designed by Linda Sonders Design/Martina Dominguez of Florida. “We had an Amazon wish list and posted that and lots of people donated things from that.”
Those gifts included the TV stand, a karaoke machine, and an old-fashioned, free-standing popcorn machine.
The basement area once had dark wood paneling and, like basements in the homes of many busy families, was a mix of storage and leisure space. The renovated version is completely transformed: The paneling has been painted white and the space is decorated with splashes of red: the curtains, a rug, and even the popcorn maker.
In a video taken by Make-a-Wish employees, Keating descends the stairs for the first time since the room is redesigned. While he at first seems overwhelmed, he’s soon squealing with joy and breaking out in little dances.
“To have a child be part of Make-a-Wish, which is so nice, it’s also at the same time a club that I’d rather not be a part of,” said Eliot Keating. “You mentally prepare yourself for certain things in life but this is not one of them.
“It’s definitely so sweet and endearing that we’ve had the lovely people from Make-A-Wish be so kind to our son James,” he continued. “And as well have shown the love and support to Teddy.”
The basement movie room “will always be there in our house and we can all be together,” said Martine Keating. “We had our snow day yesterday and we were down there all day. It’s been a lot of fun.”
The magic Make-A-Wish creates for children is “totally donor-based,” said Vincent. This year, because of the pandemic, the Connecticut branch had to cancel its two fundraisers, which are usually held at Mohegan sun and the Greenwich Country Club. More information may be found at wish.org/ct.