Community Comes Together to Send Girl With Rare Degenerative Muscle Condition to Disney

A little girl from West Haven who suffers from a rare degenerative muscle condition doesn't remember the Disney trip the Make-A-Wish Foundation granted when she was just 2 years old and the community is coming together to raise funds to send her on a trip she'll be able to reminisce on.

Five-year-old Eva Grace Kelly has Spinal Muscular Atrophy and she is unable to walk, speak or swallow food on her own. She also requires 24-hour nursing care and often has to get therapy.

“She was never even able to hold her head up or sit up right. So she does have a power chair that she does control herself. She has enough movement in her hands to control the power chair,” Eva's mother, Missy Kelly, said.

Eva is rapidly losing muscle movement, including the muscles that help her smile. Now, she smiles by raising one corner of her mouth. 

"We call it the Elvis smile," Kelly said.

But Eva has the mind of a typical 5-year-old and loves watching cartoons, clothes, her dolls and all things Disney.

The little girl has stolen the hearts of many people throughout Connecticut and people began raising money to send her to Disney World for a trip that she will remember.

Needs Clearing House, based in Fairfield County, has paid for airfare and the hotel.

Planet Pizza, in Norwalk, is also raising money.

Dave Kuban, of Monroe, owns the shop and has had wristbands and shirts made in support of Eva.

The purple wristbands say “Eva the Diva.”

The wristbands and shirts are among some of the items that will be sold at a July 5 fundraiser at the Valley Diner in Derby.

The fundraiser, which runs from 5:45 p.m. to 9 p.m., will help pay for other expenses, such as tickets into the park.

When the Make-A-Wish Foundation took Eva to Disney World, she wasn’t expected to live longer than age 3, but Kelly said Eva is beating the odds and living longer than expected for children who suffer with her condition. 

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