Lillian is the grandmother of Jenna and Jesse Kiel who have classic MSUD. They are the children of Carl and Sandy Kiel from Michigan. The family was featured in our spring '95 issue. Jenna is now 8 and Jesse is 6.

Before Jenna was born, I had never heard of MSUD, and what it involves for a family. It was very hard at first to eat what we considered to be "good" food, knowing that Jenna couldn't have any. But Jenna and Jesse seem to take it mostly in stride. This summer while they were camping with us, we had fish for supper one night. Jesse said, "Fish are yucky to eat, aren't they Grandpa?" and Grandpa said, "They are if you don't like them."

When the kids come over to my house, I try to have the special boxes of macaroni for them: Animaniacs or ABC's shapes.* Jesse loves lots of ketchup with his macaroni. In fact he likes ketchup with most everything! I've noticed if I put out candy for all the grandkids, the Skittles dish is empty before the M & M's, which I always thought were the favorite candy. Jenna and Jesse are delighted if I buy melon during the winter for them. Jenna likes watermelon and Jesse likes cantaloupe, which he calls "orange melon." Their ice cream has always been Cool Whip with sprinkles, but now Sandy tells me, we can freeze French Vanilla nondairy creamer, which should be more like ice cream.

Sandy usually has treats at school for them if other kids pass out something they can't have. The teachers are very accommodating at school - they will call if they know someone is bringing something special, so Sandy can make something similar for Jenna and Jesse to eat.

I remember taking them to McDonald's for a Happy Meal and they got the fries, drink and toy, and I ate the hamburger. After playing on the toys awhile, Jenna wanted to get the free little ice cream cone they were giving to kids. I said, "You can't have that can you?" She said, "Not the ice cream, but I will just ask for the cone." It helps a lot that they understand what they can eat, and usually they accept that very well. All in all, they are happy, fun kids and we're enjoying them a lot as grandparents.

Note from Sandy (Mom): Jenna and Jesse say that Grandma Westdorp is special because she always has candy for the kids. When our whole family gets together, she always creates a special dessert just for them - their favorite is made with an Oreo crust, Cool Whip, and sprinkles on top. On Valentines Day she brings over bags of goodies for the kids, and Jenna and Jesse get protein-free candies, and special heart-shaped Krispie bars. She always brings us wonderful fresh fruit - even when it's out-of-season and expensive! Grandmas are SPECIAL!

* Not a low protein pasta.


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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