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Shortly after the 1996 MSUD Symposium in Columbus, Ohio, I received a phone call from the Columbus branch office of a national wish foundation, A Special Wish. Apparently, one of their volunteers had seen the Columbus Dispatch article about our son Jordan that mentioned MSUD and the Symposium. The caller proceeded to say that because of the information in the article, Jordan may qualify to have a wish granted. Immediately I got a sick feeling in my stomach. My perception was that wishes were granted only for terminally ill children.

My initial response was to defend MSUD. For the most part, I explained, MSUD children were doing better than ever. She explained that to have a wish granted the managing physician needed to sign a form stating that the disease is potentially life threatening. I was surprised to learn this, but still felt uneasy about the whole idea. I realized that I viewed Jordan more as a happy boy with a special diet than as an ill child, so it was difficult to believe that he could qualify. However, within a few months, the paperwork was complete and off we were to Orlando, Florida.

A Special Wish provided a long white limousine to take us to the airport. Tyler (our 10-year-old) and Jordan (age 7) had never been in a limousine before, so this was really fun for them. We arrived in Orlando at 1:20 p.m. and were greeted by a volunteer holding a sign with Jordan's name on it. After getting our rental car, we drove twenty minutes to Give Kids the World Village.

Give Kids the World is an independent, non-profit organization dedicated to providing six-day, all expenses paid family vacations in central Florida for children with life threatening illnesses whose wish it is to go to Disney World, MGM or Universal Studios. The organization is supported by donations from many corporations and hundreds of volunteers. Families are referred to Give Kids the World by more than 250 foundations, hospitals, and hospices worldwide.

The Village, located on 350 acres of land, was opened in 1989. We stayed in one of the beautiful two bedroom vacation villas. There was much to see and do at the Village. Meals were provided in the Gingerbread House. There was a wheelchair accessible, heated swimming pool, playground, fishing lagoon, nature trail, a castle (where the boys played video games and never had to put a coin in), an ice cream parlor, and a carousel.

Friday morning, October 18, 1996, we started our first full day in Orlando. We ate breakfast in the Gingerbread House with the other families. It was difficult to see some of the children who were obviously very ill, and my heart ached for them and their families. There was a wide variety of food served cafeteria style, and we always found enough food appropriate for Jordan's diet. We spent most of the day at MGM Studios. In addition to payment of all travel expenses and admissions, we were given a predetermined amount of cash to spend on food outside the park and for souvenirs. The boys really enjoyed the Indiana Jones Stunt Show and the Honey I Shrunk the Kids Park. Jordan wore a Give Kids the World button which proved invaluable. We were able to enter the handicapped entrance and board rides or attractions before other park guests. Most park employees recognized the button and paid special attention to him.

Saturday we spent the entire day at the Magic Kingdom. The boys really enjoyed Thunder Mountain Railroad (roller coaster) and the Haunted Mansion. It was a crowded day, but because we didn't have to wait in lines, we were able to see and do many things. The driver of the Jungle Cruise boat ride spotted Jordan's button and asked him to steer the boat. He was so excited. In the evening, we were given front row seats for the Electric Light Parade.

Sunday, we spent several hours at Epcot Center and then relaxed around the Village pool in the afternoon. We were still exhausted from the previous day's adventure at the Magic Kingdom. Sunday evening we went to Wild Bill's, where we ate dinner while we watched country dancing, Indian dancing and rope twirling. At 9:30 that evening, Mayor Clayton, the Village Mascot came to our villa to "tuck-in" Tyler and Jordan. Mayor Clayton was a very large bunny character who spent 15 minutes teasing and playing with the boys. They giggled so hard that it took them a long time to settle down and fall asleep.

Monday morning we ate breakfast in the Gingerbread House with the Disney characters and then went to Universal Studios. The highlight of the day was petting the St. Bernard dog that played Beethoven in the movies. While we were waiting in a long line for lunch, the attendant saw Jordan's button and we were escorted to the front of the line and seated immediately. Everyone at the Village and the Theme Parks were very generous and treated us with extra kindness. Monday afternoon we went to Gatorland. We expected to see a few alligators, but instead there were alligators everywhere! I think Dave and the boys enjoyed them more than I did. That evening we went to a pool party at the Village with the Shamu character from Sea World.

Tuesday morning we packed up and headed back to the airport. We were greeted at the Columbus airport by a limousine driver wearing a tuxedo and holding a sign that said JORDAN BULCHER. Jordan felt so special. Every detail was thought through and well planned by both the Kids Village and the Wish Foundation. Undoubtedly, it will be our most memorable vacation. We felt very fortunate to have experienced such a great trip and are thankful to all who made it all possible.

The national headquarters of A Special Wish Foundation is also located in Columbus, Ohio. To have a wish granted, a child's physician needs to determine that the disease is potentially life-threatening, the child must be under 20, and live in the United States. Only one wish per child is granted. Anyone can call the national office of A Special Wish at 1-800-486-9474 and they'll determine which office in your area will grant the wish.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

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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