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Presenter: Sara Kiel

Sara is the daughter of Carl & Sandy Kiel from Jenison, MI. She is 9, years old.

Hi, I'm Sara Kiel. I have a sister and 2 brothers. My sister Jenna, who is 5, and my brother Jesse, who is 3, have MSUD . . . and then there is my other brother, Adam, who is 11.

It was scary when I first found out Jenna had MSUD. I didn't understand what it was because I was only 4 at the time. As I grew up, I learned more about this disease and what Jenna could and could not eat. I also know that she has to drink her formula. In the last three years we have had Jesse around the house, which not only means another pain but another brother to drive you crazy.

Jenna has come to a stage where she started drinking her formula out of a cup, and this year she got a new formula. She gets stubborn and won't drink it. It is a pain to get her to drink and boring to sit there counting every little sip she takes. Now that Jenna goes to preschool, mornings just get a little bit busier trying to get her to drink. Being a sister to Jenna and Jesse means telling baby-sitters what they can and cannot eat, which formula goes to whom, and how to get Jenna to drink her formula. I have to tell my friends about MSUD when they ask.

When either Jenna or Jesse goes in the hospital it makes me feel worried, but I also feel happy for them because they are getting the treatment they need. It is fun to go to the hospital because there are neat pictures hanging on the wall. Near Christmas they have gingerbread houses. I also like to go to the playroom, cafeteria, supply room, and the mezzanine. The mezzanine has a stained glass sculpture that turns. It's cool!

Mealtime at our house is different than at most, because my Mom has to cook two meals. I like baking Lo Protein cookies and brownies with my Mom. At supper time Jenna and Jesse usually eat a potato, rice, or macaroni without the cheese and milk. And they have to put ketchup on EVERYTHING! Going out to eat means getting lots of fries and having Jenna beg for the pickle off everyone's hamburger.

Some experiences I have had include mistaking Jenna's formula for my cup of milk in the fridge. The flavor gave me a little shock there! I guess you get used to the taste after awhile.

To me, it is fun having Jenna and Jesse as a brother and sister because at Halloween I get to trade my smarties for chocolate candy. Another fun time was when Jenna and Jesse had their pictures taken for the Mead Johnson Special Kids Calendar. We got to meet photographers from California. On that same day I got to skip school and go to the Mead Johnson formula company and see their formula being made. They gave us a tour, and we all got a cool hat and other stuff.

In school Jenna is like anyone else except she brings her own snack every day. This year my class read to Jenna's preschool class, and I got teamed up with Jenna. I read books and we did art projects together sometimes. We made a book about her favorite foods. Jenna's book included potatoes, macaroni, and pickles, of course! Sometimes life gets a little bit crazy with formula and all this MSUD stuff, but actually having people in the family who have MSUD isn't that bad!

Sara was encouraged to honestly tell how she felt about her siblings with MSUD getting so much attention when they were sick. Sara's mother assured Sara she wouldn't be mad or upset at her for her answer. Sara admitted that it sometimes made her "MAD." She frankly answered a number of other personal questions from the audience. Thanks for bravely sharing with us, Sara. We parents wonder about the feelings of siblings, and it is wise to tell us, even though we may feel quite helpless to change the situation. Sara did a great job with her presentation. She and the next speaker, Vicki Delaski, were delightfully humorous.

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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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