Life-changing diagnosis: West Haven parents appreciate every day as they work to raise awareness of daughter’s illness

Life-changing diagnosis: West Haven parents appreciate every day as they work to raise awareness of daughter’s illness

New Haven Register | October 1, 2011 | By Amanda Pinto

WEST HAVEN — Little Eva Grace Kelly is wearing a flowery white dress, a festive, pink hair bow atop her tiny, 8-month-old head. She gazes up as her mother tucks a Minnie Mouse doll under her arm, and breaks into a wide grin when her dad kisses her face.

It’s the kind of scene parents everywhere enjoy with their babies; the difference is the setting.

Eva is in the Pediatric Intensive Care Unit at Yale-New Haven Hospital. She’s been there for seven weeks, and her parents, West Haveners John and Melissa Kelly, don’t know when or if she will get to come home.

Eva has spinal muscular atrophy, a rare motor neuron disease that affects muscles used for crawling, walking and swallowing, and keeps Eva from being able to cough.

She has the most severe form, Melissa Kelly said, and babies with her diagnosis commonly don’t live past the age of 2. She was taken to the hospital to be fitted with a feeding tube, and then contracted an illness that led to a collapsed lung, which a breathing tube now keeps inflated, John Kelly said.

It is emotional to visit a wide-eyed baby afflicted with a “horrible” disease, so Melissa Kelly and her husband have decorated the room with brightly colored pictures, balloons and stuffed animals.

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