Dear MSUD friends,

I will start with me. I am thirteen years old. I too am MSUD. I feel satisfied about it, because I learned to accept that I may not eat everything the others do. I have two brothers that are MSUD. I will name them later. I am glad to have two MSUD brothers although one died. I will name him later. I hope I do not get too sick, although sometimes I linger at that. I get severe stomachache and headache. Sometimes I believe Mother and Father don't like me. Mother and Father and sisters and brothers just don't know me. They don't understand, that's why it is so hard to get going with Susannah and Mother. The same with the boys. I never did dare to talk to Father. The boys, they don't understand me, I am quite sure. I guess the reason is because I am scared to talk to them.

If you ever want to meet me, you will have to be prepared to see brown hair, blue eyes, glasses, quite high, and a little slim. I am a healthy MSUD girl and I have good teeth. I think I grew, because when I was six or seven, I cut an apron belt because it was too long - and now it is too short. Mother and I once talked of MSUD. Mother said it was not the parents' plan that I must be different. It was all in the Great and Almighty Power's hand.

We have ten (living children) in the family.
John20Jan. 25, 1977
MSUDIshmael Born May 20, 1978
Died Aug. 17, 1982
Eli18Apr. 21, 1979
MSUDBenjamin16Oct. 5, 1980
Susannah15Dec. 14, 1981
MSUDLydia14Aug. 11, 1983
Samuel12Aug. 11, 1985
Edwin9Feb. 21, 1988
Sarah7Oct. 26, 1989
Lucinda5Jan. 22, 1992
MSUDNoah3Nov. 16, 1993

I like when it rains - the things can grow. The things I like to eat are low protein cake, potatoes, fruit, a little peas, corn, tomatoes, strawberries, raspberries, carrots, rhubarb and grapes. The things I don't like to eat are plums, flour, protein, cake, cheese, sausage, meat - because those I may not eat at all. Then there is milk, I may not drink. I may have water, tea, and all sorts of drink!

I like to watch things grow on a farm. As you know, we live on a fairly big farm. We have many trees, a short lane, a white house with a green roof, a brown-gray-red barn and a gray wood shop with a green door where they make rocking chairs. Once an old couple lived in the doddy house (separate quarters for an older generation - usually grandparents), Samuel and Hannah Horst, but they died when they were very old. Now I sleep in the doddy house and my three sisters do, too.

We sold many strawberries. We also have four gardens and three rows of strawberries in the first garden and two rows in the second garden. In the third, we have flowers, peas, strawberries, onions, cabbage, red beets.

I like formula. I put Ketonex 2 (275 gm) and Polycose (150 gm) in and then orange drink, then add water (this is divided with Ben). I also bake for the MSUD children on this farm in our household.

I like the evenings with the family at hand. I am tired. Today we did a lot of Monday work since yesterday was Sunday. Tonight we want to go to the field. The sun is shining. I am at the table, rewriting this to you. Yes, true enough. How I wish you would write to me.

Tomorrow is Tuesday, August 5, 1997. I will go to Uncle Joseph Hoover's to help them. Eva Dyck is with us. I enjoy it and hope she enjoys it. The boys are out toiling till the day is done. This reminds me of a song: "The time for toil is past and night has come..." "Life is like a mountain railroad..." is another song.

I like to have brothers. When Noah was born, I felt very pleased and wished with all my heart he would have MSUD! How I hated when Mother and Father said they don't want him to have MSUD. Then later when Noah got sick, I realized I shouldn't have wished something like that! Now that Noah is three, he is a busy little brother. To us, he is an enjoyable boy. Now years later, I am thankful to have Noah as MSUD, but even if he would not, I would still enjoy him. You don't know what it means to me to have Noah as a partner in MSUD. Now, you know, Noah is three and still drinks from a bottle. What can we do?

When I crack eggs to bake a cake for the healthy ones, I think, "Now, why must I? I won't even have a husband if time goes on. I might be an old maid. Who knows? I may not even eat the dough - why then must I bake for them?" I don't always appreciate to bake, but if it is my duty, I might as well accept it.

How do you feel? Do you sometimes feel sick? I would like to write to somebody my age who has MSUD. I would like to write to one of you. I would like if you would tell me what you like. You wouldn't have to put it in the Newsletter, write just like a pen pal.

If someone would like to be a pen pal to Lydia, e-mail This email address is being protected from spambots. You need JavaScript enabled to view it.


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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