Community Rallies Around West Haven Girl, 5, Living with Spinal Muscular Atrophy

West Haven, CT — The community is rallying around a 5-year-old West Haven girl living with Spinal Muscular Atrophy, a rare degenerative muscle condition that has left her without the ability to walk, stand, breathe or swallow food on her own, but she continues to defy the odds every day.

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Eva Grace Kelly has already outlived the statistics with most children afflicted with SMA not making it to their second birthday, according to the Eva’s Miracle website.

Eva, who requires around the clock nursing care, lives in West Haven with her mother Melissa Kelly, her older brother Noah, 10, and her cats Ruby and Grayson, according to the website.

Eva’s breathing is assisted with a tracheostomy tube that is connected to a ventilator, which she requires 24 hours a day and she also has a g-tube and is fed with a feeding pump because she is unable to swallow food.

Despite Eva's situation, “it would be highly unlikely to find her without a smile on her beautiful face! She simply enjoys life and is affectionately called ‘Eva the Diva,’ due to her very extensive wardrobe and individual personality that is larger than life,” according to Eva’s Miracle.

But due to her condition, Eva is losing her ability to smile, according to the New Haven Register.

Eva loves all things Disney and the community is rallying to get her there while it can still put a smile on her face, according to the Register.

Several fundraisers are planned, including a Bike Night for Eva at the Valley Diner Restaurant in Derby on Tuesday, July 5 from 6 p.m. to 9 p.m.

“Eva's mom recently purchased a handicap van to get Eva to and from her doctors and to keep Mobil our goal for the bike night is to try and put a dent in the amount owed on the loan,” according to the event listing on Facebook.

Pam McLoughlin of the Register reports that a Fairfield County giving organization, the Needs Clearing House, has 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, and the trip is booked for the end of September.

Next week’s fundraiser also aims to cover expenses such as food and park tickets for the Disney trip in addition to the van payments, according to McLoughlin.

There currently is no cure for SMA.

Melissa Kelly told McLoughlin that her job as “a mommy is to always have hope… No matter how tired or exhausted I am, I have to have hope.”

Read more at the New Haven Register here.

For more information on Eva and upcoming fundraisers, visit Eva’s Miracle here.

Photo via Eva’s Miracle on Facebook