West Haven girl, 5, racing against time to get to Disney World Race on to get girl, 5, to Disney World to bring her joy

(Contributed Photo) Eva Grace Kelly, 5, of West Haven, has a rare condition that causes her muscles to stop working and is beginning to block her ability to smile. (Contributed Photo) Eva Grace Kelly, 5, of West Haven, has a rare condition that causes her muscles to stop working and is beginning to block her ability to smile. Photo: Journal Register Co. Photo: Journal Register Co. Image 1 of / 1 Caption Close West Haven girl, 5, racing against time to get to Disney World 1 / 1 Back to Gallery

WEST HAVEN >> It’s a race against time to get 5-year-old Eva Grace Kelly to Disney World while she still has the ability to smile.

Eva, a Disney fanatic, has a rare degenerative muscle condition that has left her unable to walk, talk, stand, breathe or swallow food on her own.

Now, even though her eyes still twinkle, Eva is losing her ability to flash her once-wide, bright smile.

“Over the last couple of years she’s lost a lot of muscle control and she’s losing her smile,” said her mom, Melissa Kelly. “She has what we call the Elvis smile – only the right corner of her mouth goes up.”

The community is rallying through fundraisers to get Eva to the “Most Magical Place On Earth” while she can still do her “Elvis” smile.

A Bike Night fundraiser will be held from 5:45 p.m. to 8:45 p.m. July 5 at Valley Diner, 636 New Haven Ave., Derby, with trophies and raffle prizes. You do not have to have a motorcycle to attend. The fundraiser aims to cover expenses such as food, park tickets for the Disney trip and to help make payments on a specialized van to transport Eva in a daily life full of therapy appointments.

“The family is devastated financially,” said Dick Lupkas, who has regularly held fundraisers for the family, and who has said of Eva: “She just draws your heart to her when you see her.”

A Fairfield County giving organization, the Needs Clearing House, run by Joseph Kaliko — who doesn’t take a salary for his work — found out about Eva’s wish through a Facebook post and paid for the air fares and Disney hotel for six people, including Eva’s immediate family and two nurses who will take turns with her care 24 hours a day.

Dave Kuban, owner of Planet Pizza in Norwalk, whose wife is friends with Eva’s aunt, is raising money at his restaurant and had “Eva the Diva” T-shirts and bracelets made to sell at the fundraiser. Kuban is also a motorcycle enthusiast. Kaliko read about Eva’s wish on Kuban’s Facebook page and told him, “We’re going to make this happen,” Kuban said.

Kaliko’s organization, based in Greenwich, helps with a wide variety of needs without the red tape, including the homeless, veterans, children in need of care, and even those who face eviction.

Eva was born with the severest form of spinal muscular atrophy, a progressive, genetic disease that usually kills children by age 2. Melissa Kelly said parents of children born with SMA are told by doctors, “Take your child home and love them until their time is up.”

Eva has already defied the odds by surviving to her fifth birthday, and her mom believes much of it has to do with her little girl’s strong will to live and because the family has put a focus on Eva’s quality of life and worked overtime to make it as typical as possible, even sending her to school and risking that a simple cold put her in the hospital or worse.

Eva has little movement, requires 24-hour nursing care, relies on a machine to breathe and is fed through a tube in her stomach.

But despite it all, her intellectual development is typical, and so like many her age, Eva loves all things Disney, watches many Disney shows and adores the princesses.

She went to Disney with the family at 2 through Make-A-Wish Foundation, when they thought she wouldn’t live till age 3, so she isn’t eligible for another trip. Eva doesn’t remember the trip.

Melissa Kelly said it is her job as a mother to have hope and so she is doing all she can to keep her daughter happy while she’s here, including working with a speech aide that relies on eye movements.

Right now, even though Eva is rapidly losing muscle ability, “she’s thriving, she’s stable and she has a great life,” Melissa Kelly said.

Eva, who once had a “beautiful, wide smile,” according to her mother, despite her movement limitations, still has the light in her expressive eyes to show when she is happy, sad or angry, Melissa Kelly said. Someday that may be gone too.

She can still get one corner of her mouth up to smile.

This last year Eva had surgery and cannot have her knees bent, so she requires a special stroller.

The disease eventually causes all muscle tone to fade and eventually that includes the muscles for breathing.

Melissa Kelly said Eva is “very excited” about the trip to Disney, booked for the end of September.

“We focus on the things she’s able to do, rather than the things she can’t do,” Melissa Kelly said.

Melissa Kelly has said many times, “My job as a mommy is to always have hope…No matter how tired or exhausted I am, I have to have hope.”

The hope is that a cure will be found for SMA while Eva is still here — and Kelly has said researchers are making great strides with that type of disease, in the same category as amyotrophic lateral sclerosis or ALS, also referred to as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects adults.

Those who cannot attend the Bike Night can send donations directly to the family at : Eva’s Miracle, c/o the Kelly Family, 156 Central Ave., West Haven, 06516.