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 live past her second birthday, but Eva, now 13, is thriving with round the clock nursing care and a dedicated family. Eva's family is looking for someone to establish an annual fundraiser for Eva.
Eva Grace Kelly of West Haven wasn't expected to live past her 2nd birthday, but Connecticut's 'miracle child' celebrated her 13th birthday this year. Now her family is hoping someone can come up with an idea for an annual fundraiser. Connecticut 'miracle child," Eva Grace Kelly, 12, and her brother, Noah Kelly, left and their mother, Missy Lombardo Kelly, Connecticut 'miracle child' Eva Grace Kelly, with her mother, Missy Lombardo Kelly, left and her brother, Noah Lombardo, right.
Eva Grace Kelly wasn't supposed to live past her second birthday, but Eva, now 13, is thriving with round the clock nursing care and a dedicated family. Eva's family is looking for someone to establish an annual fundraiser for Eva. Anyone with an idea for an annual fundraiser or who wants to make a donation to Eva’s care can contact Kelly at missyk1271@aol.
com or 156 Central Ave., West Haven, 06516. This year the family is saving toward a handicapped-accessible van they need to get Eva to and from school, therapies, and doctor appointments.
Their 2008 Chrysler van has a hole in the gas tank, temporarily repaired, and isn’t modern enough to hold Eva’s new standing wheelchair correctly, Kelly said. Kelly is unable to work because of all the care Eva requires. While she’s approved for 24/7 nurses, the national nursing shortage often leaves shifts open that mom must fill, including overnights.
Kelly often goes without sleep. When she was only months old, Eva’s parents were told to take her home from the hospital and love her for one or two years because that was likely all the time they would have. SMA is a progressive, paralyzing neuromuscular disease that’s been likened to a children’s version of amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
The progression of her disease has slowed in recent years because of a relatively new drug, spinraza, but it cannot reverse the damage. While Eva is often referred to as a miracle, it appears she has also had impeccable care. A nurse accompanies Eva to school each day and she has an overnight nurse as well to make sure she keeps breathing and to intervene if her alarm goes off.
Eva relies on a respirator 24/7 to breathe and has a feeding tube. She communicates through an eye gaze device. Eva, who lives in West Haven is soon starting seventh-grade and has grown a lot to weigh about 75 pounds, Kelly said.
The mom said she’s beginning to look like a teenager and develop teenage taste in reading, now engaged in the Harry Potter series. Eva, known as a fashion plate, has even started wearing makeup on special occasions, mom said. While the physical growth is wonderful news, Missy Lombardo Kelly said, it also has increased the need for some new equipment.
She called it “a good problem to have.” Eva gets around using a wheelchair that she operates with her finger tips, one of few areas of the body she can move. Kelly said she’s looking for another fundraiser because it’s been a “blessing” every year.
Last year they raised enough money for a new generator in case the power goes out, as Eva can’t survive without a respirator. Although she lost her “beautiful smile,” several years ago, they can tell when Eva is happy because she can still smile with her eyes and eyebrows, her mom said. When Eva was 8 months old, the doctors held a family meeting at the hospital, chaplain present, and told them she was too fragile for a needed surgery.
Eva rallied. Shortly thereafter, she became strong enough for surgery — and she got home..
