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Hi everyone! We are the Falconers. Many of you met us at the MSUD Symposium 2002 in Ann Arbor, Michigan. We live in Anchorage, Alaska. My husband, Navid, was born and raised here, and I am from Asturias, Spain. Our son, Marlon, who has classic MSUD, was born on Sept. 25, 2001. He was diagnosed at three days of age through the state of Alaska's newborn screening program.

At 6 months of age, Marlon had an intestinal virus and lost his appetite completely. This was the only time he needed to be hospitalized. While in the hospital Marlon picked up RSV [a virus that is a major cause of acute respiratory disease in children]. He has also had several ear infections. Throughout these illnesses his branched-chain amino acid levels remained stable, and he recovered quickly. Otherwise he is very healthy. He loves to eat fruit and his low protein foods and enjoys taking his bottles of MSUD formula with Isomil added as a source of natural protein.

We recently visited my family in Spain and spent one month there. I was a little nervous about going to a place where I had no experience with the MSUD treatment. Several months before buying plane tickets, I decided to do some research on MSUD treatment in that country. I wanted to know where to find specialists on metabolic disorders, what treatment they use when leucine levels are elevated, and where to get Marlon's branched-chain amino acid levels analyzed. My family and friends in Spain helped me to gather this information.

To my surprise, I learned there is a big department of metabolic disorders in the Hospital General de Oviedo, Asturias, near my parents with whom we were going to stay. They have a big PKU clinic and currently have patients with MSUD. I had a family member call one of the doctors listed with the metabolic department. He was very kind and willing to explain the procedures used in an emergency so we would feel comfortable during our stay in the area.

I wanted to plan ahead for the large amount of MSUD formula Marlon would be consuming during the month we planned to be gone. I thought if I sent it by mail ahead of time we would only need to carry a few cans with us when traveling, and we would not raise any suspicion at customs. Three months before we left, I sent formula, carnitine, Wel-plan baking mix and other low protein products to Spain by mail. The day before our departure the package had not yet arrived at its destination. I had to pack all the cans and products in our carry-on bags.

Twenty days after our arrival in Spain customs sent us a notice telling us the package had finally arrived. However, the Department of Health had to inspect it, and we were charged an additional $70 to cover the inspection and the custom taxes. We learned from this experience. Carrying the cans of formula, however, caused no problems at customs or airports. On one occasion they did ask what the cans contained, but were satisfied with our answer. We did not even have to show them the "traveling letter" we had with us explaining the cans.

Our month in Spain went great. Marlon was in good health throughout our time there except that he had a reaction to a chickenpox vacination given to him prior to our departure from the U.S. He ran a low grade fever for two days, but we were able to control it by managing his protein intake. He was soon crawling around, going up and down stairs, strolling down the streets and calling "bau baus." (This is the Spanish name for dogs, but Marlon uses it for cats, horses, birds, cows and all living and moving beings in sight.)

Marlon met all my family, as well as many of our friends. He particularly enjoyed going outdoors. Our weather in Anchorage doesn't allow us to go out much during the winter season. Marlon was happy that "El NiƱo" was influencing the weather in Spain. It was unusually warm for this time of the year, in the 60's or 70's, with warm winds from the Sahara blowing constantly.

After breakfast, Marlon loved to go out in the streets, shopping, visiting with farm animals, and meeting lots of people. He was so busy all month, he even complained when it was bath time, ordinarily a favorite time for him. At home Marlon leaves everything to go have a bath, but there, he was just too busy socializing and taking care of other business.

While we were in Spain, Marlon started saying a few words in Spanish. He learned how to walk, and now gestures with his hands like a Spaniard, moving his hands up and down along his sides, when he "talks" or tries to communicate. He laughs like the retired men that he often saw on the main square in town. He throws his head back, opens his mouth wide, and then slaps his thighs with his hands as he laughs out loud. Quite a posture for such a little boy!! He hardly has enough thigh for such an action!

We all had a great time during this trip. I am very thankful that Marlon was healthy and that all our preparation helped to make everything go smoothly. Following are tips that I gathered with the help of many MSUD eGroup members who sent me suggestions before our departure. Keeping those tips in mind and using a few of my own, we did not miss a thing or forget a single detail. I think we were very successful. Thanks again to all the members that helped us prepare for the trip.

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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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