Connecticut’s “miracle child” is usually coming off an annual fundraiser this time of year that helps defray the costs of her care. But now Eva Grace Kelly ‘s family is actually looking for a new annual fundraiser, as the person who ran her annual “Bike Night” motorcycle fundraiser for a decade has retired. “I’m grateful for 10 years of Bike Night.
..We’re blessed,” said Eva’s mother, Missy Lombardo Kelly.
“I’d love it if someone could come up with an idea.” Eva, 13, has Spinal Muscular Atrophy, a rare disorder that has gradually paralyzed her. Eva can’t breathe or eat on her own, walk, talk or move most of her body, but she is a happy girl, despite it all.
Doctors didn’t expect Eva to make it past her 2nd birthday, but with around-the-clock care, she has survived, even “thrived,” mom said. Hence, she’s become known as a “miracle child.” “She’s amazing.
She’s doing so good,” Missy Lombardo Kelly said. “She still amazes me every day.” The annual Bike Night of motorcycle enthusiasts didn’t come close to covering the costs associated with Eva’s condition; she has insurance for that and sometimes, grants.
But the few thousand dollars or so every summer went a long way for other costs associated with Eva’s condition, including the family’s high electric bill for running monitors, equipment to improve the quality of her life, and construction to make their home handicapped accessible. Eva Grace Kelly wasn't supposed to li.