A girl called CT’s ‘miracle child’ can’t move on her own. An effort is underway to help her family.

Twelve-year-old Eva Grace Kelly, known as Connecticut’s “miracle child,” requires 24/7 nursing care and can’t move, talk, breathe or eat on her own.

But each time one of life’s crinkles appears, such as the need to find Eva a bigger bed or a ceiling track to transport Eva from room to room, mom rejoices because it means her only daughter is still alive.

“She’s beyond a miracle. Never in a million years did we think we’d be here at 12,” said Eva’s mom, Melissa Lombardo Kelly. “These are good problems to have.”

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.

Eva has Spinal Muscular Atrophy, a rare, progressive, paralyzing neuromuscular disease.

Eva relies on a respirator 24/7 to breathe and has a feeding tube. She communictes through an eye gaze device.

Eva gets around using a wheelchair that she operates with her finger tips, one of few areas of the body she can move.

The progression of her disease has slowed in recent years because of a relatively new drug, Spinraza, but cannot reverse the damage.

Eva didn’t have the benefit of the drug from the beginning like those born today with SMA who can remain active.

One of those “good problems” the family has now is that they need a new customized handicapped van to transport Eva to school in West Haven, to go to therapy in New Haven, to get her Spinraza treatments and to social activities such as Pop Warner cheerleading. Eva must travel with lots of needed apparatus.

Their current van, a 2008, has a hole in the gas tank that has been temporarily sealed by a mechanic. A new tank was priced at $5,000, Kelly said.

The community is stepping up to help with he fundraising toward a van, which Kelly estimates would cost about $60,000.

An annual motorcycle Bike Night with trophies will be held in Derby July 10 at the Valley Diner and a huge tag sale will be held at the Kelly home June 24 and 25.

Richard Lupkas who has organized the Bike Night fundraiser for years, said Eva is “adorable,” and he feels for the family.

“I just want to see her get better,” Lupkas said. “It’s a miracle that she keeps going strong.”

Kelly said the fundraiser has 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.

“It’s been a blessing every year,” she said. “Our hearts are full every time we leave there because it’s such an amazing experience.”

While Eva is often referred to as a miracle, it appears she has also had impeccable care and in these last four or so years, Spinraza.

A nurse accompanies Eva to school each day and she has an overnight nurse as well to make sure she keeps breathing and intervene if her alarm goes off.

Mom said the nationwide nurse shortage has led to her having to take the night shift most days, leaving her sleep deprived with just a few hours of rest here and there.

Kelly also focuses on Eva’s quality of life, filling her 70 pound social butterfly with extra-curricular activities and play dates. The preteen is also known as “Eva the Diva.”

“In in awe of how far she’s come and how she continues to surprise me,” Kelly said. “She’s still thriving. She loves her life. She’s a happy little girl enjoying life.

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.

Eva’s favorite subject is math and it appears that cognitively Eva is “smart as a whip,” Kelly said, adding that it’s almost impossible to test.

Eva’s family relies on grants and community fundraisers big and small to get them through life, as there are so many expenses related to Eva’s 24/7 care, including a huge electric bill.

Haymond Law Firm and Valley Motorsports are sponsoring Eva’s Bike Night as they did last year.

The pandemic was especially tough on Eva, Kelly said, because she wasn’t able to attend school in person for two years due to the threat of COVID-19. Even a cold could be fatal, Lombardo Kelly said.

This year Eva was thrilled to attend fifth grade with only a few blips of minor sickness.

There is no cure for SMA, only Spinraza, which can’t bring significant lost function back.

Eva receives the drug every four months through spinal injection at Connecticut Children’s Medical Center in Hartford.

Because of Spinraza, children newly diagnosed with SMA are starting out able to keep functions such as walking, talking and movement, because they are treated early, Kelly said.

When Eva was 8 months old, the doctors held a family meeting at the hospital, chaplain present, and told them they would never take Eva home and that she was too fragile for a needed surgery.

Kelly believes even at that young age and through a glass partition, Eva understood what the doctors said and rallied because she wanted to live.

Shortly thereafter, she became strong enough for surgery — and she got home.

Anyone who cannot attend “Bike Night for Eva” or the tag sale that wants to contribute can send donations to the family at 156 Central Ave., West Haven, 06516.

The Bike Night event will be held from 6 to 9 p.m. at Valley Diner, 636 New Haven Ave, Derby. Trophies will be given in 14 categories.

A friend organizing Kelly’s fundraising tag sale also is collecting items to be sold. To inquire about the tag sale or donating items, call Catherine Auger, 203-455-4478. The tag sale is from 9 a.m. to 3 p.m. Saturday and 9 a.m. to 1 p.m. Sunday, June 24 and 25.