Addressing Fragile X

Rep. Gregg Harper (R-Miss.) and his wife, Sidney, weren’t sure when they were going to start having babies.

They were married nearly 10 years when “we got pregnant.” Harper likes to use the word “we” because, he says, “we” are in it together.

The delivery of their first child, Livingston, was normal. Everything seemed fine.

But soon, Harper and his wife noticed certain things about their son: his difficulty in walking; his hand-flapping; his rocking. At 11 months the parents expressed concern to the pediatrician that Livingston wasn’t walking. At 12 months (the ordinary range is nine months to a year), he began.

“Over a period of time, all the milestones were at the end of the late-normal range and we didn’t think a lot of them,” says Harper in a phone interview from his district office in Pearl, Miss.

But four months after the birth of their second child came the wakeup call. The couple went out of town for a few days, and grandparents were caring for Livingston. He got sick and was taken to the pediatrician — and that’s when the doctor discovered something was wrong.

The doctor, a friend, came over to the Harpers’ home to deliver the news. The doctor couldn’t say what specifically was wrong, just that something was.

“As you can imagine, it was a tough thing,” Harper recalls.

Harper and his wife began taking Livingston to different doctors, experts and early intervention programs due to the developmental delays he was experiencing.. At 20 months old, their son began weekly occupational and speech therapies. A local university hospital did a genetic test that came back with a misdiagnosis of cerebral palsy; the couple was told the child was a near-miss on autism.

When Livingston turned 4, Harper likes to say, a spiritual intervention occurred. A neighbor who headed all the special-education programs for the county public schools attended a seminar that included a session on children with Fragile X syndrome.

“She had no idea what it was, but her mouth fell open,” Harper says. “She said, ‘I think this is it.’ ”

Harper praises God, calling it “a little testimonial that God does indeed direct our path. I don’t know that we would have ever stumbled across it.”

The Hill
3/3/9