Perhaps some of you were able to see the November 27, 1998 airing of the Sally Jessy Raphael show. My husband Lance, my daughter Anna, and I were guests on the show. We were there to discuss MSUD. I am writing to share our experience of being on a national talk show.

I will confess, I do occasionally watch talk shows. Sometimes one needs to know that there are people out there who have more turmoil in their lives than you. Anyway, back in August while exploring the Internet, I looked up the Web site for Sally's show. There was a spot to suggest show ideas. I suggested that a show should be done to explore rare diseases.

This was all forgotten until I received a phone call one Thursday in late October. It was Ashli, a producer for the Sally show, and she wanted to know more about MSUD. After I explained the disease and our experience with it, she told me they were planning on doing a show about rare medical disorders. She said she had to talk to Anthony, another producer, and that I could expect a call from him the next day.

I really did not want to get my hopes up that we would be asked to be on the show, but my heart jumped every time the phone rang. Finally, Anthony did call. He said they were taping the show on the following Wednesday, and they wanted us on it! I was amazed! Us, on a talk show! Lance and I were so excited!

We were also very nervous. At the time, Anna was fifteen months old. How would she handle a plane ride? We also had an added challenge. Anna had broken her leg in September and was in almost a full body cast. As luck would have it, Anna's a born traveler. They flew us out to New York City on November 3. Anna loved the flight! She either slept or flirted with the business travelers.

Once we made it to New York we were treated like celebrities. We were picked up at the airport in a beautiful limousine. We just stared, wide-eyed at all of the landmarks. The Empire State Building was just beautiful, lit up in the night sky. We were really wide-eyed when we pulled up to our hotel. We stayed at the Le Parker Meridien, a gorgeous four diamond hotel on 57th Street. I wonder what the people on the sidewalk thought when a limo pulled up, but we were the ones who got out. We stayed in a suite that had a nightly rate higher than our monthly rent at home.

Unfortunately, we did not have a chance to enjoy the city. We were picked up for the taping at 6:45 the next morning. Since we were scheduled to be the last segment on the show, we had a long wait. We shared a room with another family. Their baby suffered from a disorder where she is covered with giant moles. We also met Ellen Mae, a thirteen-year-old girl with Freeman Sheldon Syndrome, an orthopedic disorder. However, we never actually met Sally until we were taping.

Finally, it was time for our segment. We were fitted with microphones and shown to our seats on the set. I have had many people ask me if we were nervous. It wasn't until we were sitting there, looking at the audience and seeing Sally standing in front of us. Yet, as you have all experienced, explaining MSUD becomes a way of life. Once Sally started asking questions, I felt as comfortable as if I were talking to someone in the grocery store. Poor Lance was not able to get a word in edgewise, though. Sally directed her questions to me, and as soon as I was finished talking, she went to the next question. Anna did wonderfully during the taping. As much as she loved the applause and the cameras, she may be destined for a career in show business! The taping seemed like it was over before we knew it. Then we were whisked back into limos, and sent to the airport. Our big adventure in the "Big Apple" was over, and it seemed like it had just begun.

About four weeks later, the show finally aired. We were very disappointed, because a large portion of our segment was edited out, to make up for time. The major reason we decided to go on the show was to advocate newborn screening. In our original taping, I spoke about how lucky we are that Anna was born in one of the 21 states that screen for MSUD. We pressed the fact that early detection is a key factor in controlling this disease. Yet that segment was completely taken out, along with a few others.

Despite that, we do not regret doing the show. We have had people approach us at church and at the store where Lance works who want to know more. Of course, one of the first things they say is, "You wouldn't know by looking at her." We are glad to be able to educate people on what MSUD is.

This was also a once in a lifetime experience. Well, maybe twice - we would still like Rosie O'Donnell to call! Once Anna is older, this will be something that she can be proud of.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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