May 13th, 2008 8:46 AM Eastern
Girl Is One of 500 Suffering From Rare Genetic Disorder
by Paula Rizzo
Eight-year-old Emily Joost isn’t able to speak to her parents. She has Aicardi syndrome which is a genetic disorder so rare only 500 people in the entire world have been diagnosed with it.
The Belleville News-Democrat in Illinois says the girl can’t walk or feed herself either but her parents aren’t complaining.
“It was very difficult for me, especially that first year,” Elaine Joost said of her daughter’s diagnosis at three-months-old. “In the beginning, it was always, ‘Am I going to be strong enough? Can I do this?’”
Emily can make noises to indicate if she is happy or upset, according to the newspaper, but she cannot form words.
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