Meet Eva Grace.
Eva is a courageous 5 year old little girl living with Spinal Muscular Atrophy (SMA) Type 1. SMA is the #1 genetic killer of infants and toddlers causing progressive muscular atrophy and weakness. Her disease affects most of Eva's physical movements including the ability to breath, cough and swallow. She will never sit, stand, crawl or walk. There is currently no treatment or cure for her disease. Children with SMA don't usually get to see their second birthday, but now at 5 years old, Eva Grace continues to defy the odds and make new miracles everyday. As her parents, we plan to stay diligent with her medical care and treatment and protect her from illnesses and germs as much as possible in the hope that her respiratory status will remain stable. Because she is unable to breath on her own, her breathing is assisted with a tracheostomy tube that is connected to a ventilator, which she requires 24 hours a day. She also has a g-tube and is fed with a feeding pump because she is unable to swallow food.
Eva is a very happy little girl and enjoys being able to live at home with her mom Melissa Kelly and her big brother Noah, who is 10, and cats, Ruby and Grayson in West Haven, CT. However, it wasn't always this way. She spent four long months at Yale Children's Hospital, which was an emotional roller coaster ride. This is where the story of Eva's Miracle began as she defied the odds and inspired thousands. Although she's home, she requires around the clock nursing care.
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. She enjoys being able to go places and do every day "normal" things. She is happiest when she gets to go out and enjoy museums, zoo's, parks and even amusement parks. Eva is registered for kindergarten in the fall and she has ALOT of friends at school, especially her 2 best friends Jocie and Caitlin.
Those who know and love Eva are full of faith, hope, and optimism that a cure will be found... and from what we've heard, they are pretty close! Eva's Miracle won't give up until that happens. So please join Team Eva in her fight against SMA!!