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The National Fragile X Foundation is pleased to see a mention of fragile X syndrome in Newsweek in an article on special needs called “When Love is Not Enough”. The article contains 4 paragraphs about Congressman Gregg Harper, his wife Sidney and their son Livingston, who has fragile X syndrome, including the challenges they face as he transitions into adulthood. You can also find this article on the stands in Newsweek’s May 2nd issue, pages 41-42.
Cole’s colleague, Mississippi Rep. Gregg Harper, faced a similar litany when his 22-year-old son, Livingston, was diagnosed at age 4 with Fragile X syndrome, the most common inherited mental disability. But the couple pushed on. “We threw away a lot of the stuff and said, ‘We’re not going to accept that,’” says Harper’s wife, Sidney.
Like many parents of special-needs children, Sidney found herself swallowed up by her child’s condition. “Your whole life revolves around figuring out what to do to help him,” she says. Quitting her nursing job, Sidney drove Livingston to endless therapy sessions (with his infant sister, Maggie, in tow), enrolled him in an early-intervention program, and put him in a mothers-day-out class to help his socialization. Told that Livingston would never swim or ride a bike, his mom signed him up for swim lessons and literally strapped him to a specially outfitted bicycle until he could ride like a pro. “The more they told me he wouldn’t do something, the more I took him to do it,” she says.
Both Harpers get misty-eyed talking about their son’s achievement. “Our goal was to have him graduate from high school,” says Sidney. “That was it: get him through the 12th grade.” Today, Livingston is enrolled in a pilot program at Mississippi State University designed for students with intellectual disabilities. Gushes the congressman:“He’s living in a dorm, eating in the cafeteria, going to classes. He’s living the life!”
And yet … for all Livingston’s progress, his future remains a question mark. The hope is that after two of three years at college, he can find some sort of job (he has experience working at a family friend’s restaurant) and, with a little luck and more oversight, live basically on his own. But as his father softly acknowledges, “We don’t know what the long term is.”