Fragile X Syndrome

Floor Speech

Mr. HARPER. I come to you today to tell you a story, and it's my family's story that has great relevance to many of you, and many of you in this country.

My wife and I met and started dating when she was 15 and I was 17. We met at a great place to meet your spouse, church. We dated for 5 1/2 years and got married. And we didn't really think we wanted children--we really wanted grandchildren, but could not figure out a way to get there. And we finally decided, after 10 years of marriage, that we would have some kids.

Our first son, Livingston, was born in 1989, and he is now 19 years old. As we went through his development in early years, we noticed that he was not doing things as soon as we thought he should be. Everything that he did was in the very tail end of the late normal range; he did them, but it was delayed. Our pediatrician told us it was okay, that he would probably grow out of this, and we continued to go along with just normal life.

At one point, when he was about 19 months old, we went out of town on a trip, left him with one of the grandparents. And he got sick while we were out of town and had to go to the doctor. At that point, the next week the doctor called me and said I think that there's something wrong with your son; I don't know what it is, but we'll look, we'll try to figure out what it is. At that point, we were 4 months pregnant with our daughter. And we didn't know, we just started looking to see why he was developmentally delayed. We started going--and I say ``we,'' my wife was the one who did the brunt of this work. There was speech therapy twice a week, occupational therapy twice a week, tests, trips to the hospital, to the doctor, all the things that you do, trying to determine what's wrong with your child.

That continued. We went through all types of tests; we went through genetic tests that came back normal, we went through other things. We were finally given a misdiagnosis of mild cerebral palsy and labeled a near miss on autism. That's what we dealt with for the next 2 years. So we did those things that you had to do to survive.

At some point in 1993, when he was almost 4 years old, our next-door neighbor went to an education seminar in Jackson, Mississippi, and went to a breakout session called Educating Children With Fragile X. Our next-door neighbor had never heard of Fragile X. And she goes to this session, watches the video, hears this parent speak, and her mouth falls open. And she comes home that night and tells us, I think this is it. At that point, we requested testing to be done specifically for Fragile X syndrome, and it was determined that, indeed, he did have that.

The things that led us to know things were wrong, he was rocking some when he would sit, he was doing a lot of hand flapping, and maybe chewing on some objects. And then he was late doing many things, speech and language and those type issues. So we got the diagnosis of Fragile X syndrome. We went to the Children's Hospital in Denver, Colorado, where he was evaluated by Dr. Randi Hagerman and her Fragile X team. It's been tough, but we have a wonderful son. He is a blessing to everybody that he comes across. And we're so thankful for our son Livingston.

Our daughter Maggie does not have Fragile X syndrome. But I wanted to mention this today because there are over 130 parents from across 35 States--all over the country--that are here today for National Fragile X Advocacy Day. And I want to commend them for the hard work that they're doing, the things that they're doing to bring attention to this.

This is something that we can work on together here in Congress. It is a bipartisan effort. We can work to find the right things for research, things that will help on treatments, and things that will ultimately lead to a cure. And I'll tell you this, for all parents of special needs children, this is something you should never give up on, never stop fighting, never quit believing. Our son graduated from high school last year. He is now in a local community college. He works two nights a week.

I want to thank the National Fragile X Foundation for all their hard work.

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