MSUD Reunion

We want to thank all who took time out of your busy schedules to come to the 1993 MSUD Reunion at the Grand Canyon of Pennsylvania. We were anticipating and working toward the picnic for so long. Now suddenly, it is history.

We really enjoyed the day. We found it impossible to do all the visiting we wanted to do.

We give special credit to our own families for taking a big part of the workload. We were eager to introduce them to our "MSUD family," and they were glad for the opportunity to be included.

The Lord blessed us with a beautiful day. The morning coolness in the shade soon turned to a comfortable temperature. It was interesting to see the group of people increasing. It wasn't long till you saw clusters here and there busily visiting. The group totaled approximately 200 people, twenty-two MSUD families with twenty-six MSUD children.

There were three out-of-state families, the Brubachers from Indiana, Walter Newswangers from New York, and the Silvas, who came the farthest, from Toronto, Canada. We thought it was a good turn-out, but we would have been happy to see more of those that couldn't come.

The biggest hurdle for the meal was the discovery that the electricity supply was not adequate for the demand. A few roasters needed to be taken back to a near-by home. A special thanks for all the food that was brought along. A woman's common worry about enough food was groundless.

The children spent a lot of time on the playground. After dinner, they tackled the challenge of "fishing" for a surprise package.

The majority of the group hiked the one mile trail to the bottom of the canyon. After resting beside Pine Creek (some weren't satisfied till they fell in), we were ready for the climb to the top again.

We attempted to take a picture with all the MSUD children. It was quite a challenge. A few were sleeping and a few weren't there at the time. A morning picture might have been more successful.

Most everyone stayed for an early supper before heading home. A few families were camping.

We were sorry Dr. Morton and his family couldn't come. But we're grateful for his dedication to his patients. That was the reason for his absence.

We had the added bonus of doing some visiting the evening before the picnic. Wayne and Joyce Brubacher spent the night at our house. This was our first meeting in person. Also, Saul and Lucy Silva with their son Mark, came from their motel to enjoy Friday supper with us. Rebecca Huyard (Dr. Morton's office manager) spent from Saturday evening until Sunday afternoon with us. We enjoyed her stay and appreciated her helping hands.

Thanks for the contribution of everyone. Our efforts were rewarded.

- John & Verna Mae Martin

An Enriching Day-A Time of Sharing

Wayne and I attended the PA picnic in June. We thoroughly enjoyed ourselves at the lovely park with a wonderful day of visiting with the MSUD families. John & Verna Mae did an excellent job of organizing and providing the picnic.

The huge, delicious lunch included a large selection of low protein foods. (One 15 yr. old filled his pockets with low protein bars to be sure he would have some for his trip home.) In the afternoon we mothers kept "sampling" the low protein pretzels made by one of the Mennonite girls. A daughter of Ivan and Katie Fox worked in a pretzel factory and wanted to make a similar pretzel for her sister, Ruth. These are the hard, Pennsylvania Dutch type pretzels. (Recipe in Recipe section.) The adults probably ate most of them. They were as good as any pretzel I've ever eaten. Unfortunately, some children with MSUD are so very choosy, they wouldn't try them!

I took a few pretzels home for Shayla and she loved them. (Shayla could not go with us as it was the same day as the wedding of her good friend Rachel, and she had part in the wedding. (Rachel helped Shayla with the bread demonstration at the last Symposium.)

A highlight for me was a conversation after lunch with several mothers of teenagers and adults with MSUD. Various degrees of learning problems and the accompanying social challenges are common in many older children with MSUD. We found a sympathetic audience as we voiced our experiences and frustrations.

I certainly don't want to be discouraging to any families. Not all persons with MSUD have these problems and the younger ones have the advantage of early diagnosis, new formulas and improved treatments. However, for us facing these challenges, sharing is informative and consoling.

We discussed issues such as how does one handle inappropriate behavior when reasoning and explaining seem to fall on deaf ears, or should I say, uncomprehending minds. For instance, how do you explain to adolescents why they are avoided at times by their peers, and being bold and demanding is not the solution?

It is hard for these children and young adults to develop close friendships, because they are very manipulative and possessive of persons showing them much attention. So parents are caught between a rock and a hard place, trying to protect children from the realities and cruelties of the world outside the family circle (and sometimes within families). Yet we also feel the need to protect others from our own manipulative, overbearing child. We find ourselves working two sides, thus feeling we are either doing an injustice to others or to our child. Each child is different and there are no easy solutions.

The fight for independence can be a real battle for any adolescent. For the youth with MSUD, the diet is one potential battleground. That can be very scary. The mother, especially, has a great deal of control over the child from infancy on. She is responsible for strictly controlling the diet and carefully monitoring the child for signs of illness and elevated levels. As one mother told me, the closer we are in our relationship with our child the more forceful may be the separation when the child seeks independence.

At our lively sharing session, some mothers frequently responded, "I know just what you are talking about." This sharing in groups and on a one-to-one basis is what these picnics and various gatherings are all about. We encourage parents in other areas to organize informal gatherings. Friendships take time to develop. Call or write letters to other families in our organization when it is not possible to meet personally.

Wayne and I have a concern for parents who feel they are alone in their trials. Each stage of child development has its challenges. We are especially concerned about those who suddenly withdraw from contacting other families in the organization during their child's adolescent years. You do not need to be alone during trying times.

Parents, we encourage you to share your experiences in the Newsletter. Just inform me if you do not want your name printed. We do not want to embarrass our children.

To the adolescents struggling with "growing pains," we welcome your stories. Maybe you find your family very helpful and would like to express your appreciation for their love, support and help. Share your feelings about having this rare disease. Is it just a natural, accepted part of your life or do you at times resent having to drink a special formula and restrict the foods you eat? How do you cope with peer pressure? What advice do you have for others? How can others best help you?

Don't be concerned about how properly your letter is written. Please take time to write, or record what you have to say on a tape. Send it to me, the editor. I will type it for you.

- Joyce Brubacher

Comments About the Picnic

It was good for me to be with other moms to discuss our children's social behaviors. I don't feel so alone. - A Mother

I got to sit at the right table and I ate 5 whoopie pies!! - Marlene Zimmerman (MSUD)

The highlight for me was the hike to the bottom of the canyon with other parents, discussing our children's problems and progress. Sharing with other parents is always special. A big thanks to John, Verna and the other families for a great job! - A Parent

We really enjoyed the picnic, especially being with the other MSUD parents. Also enjoyed the hike to the canyon. - Annie Hoover

I liked fishing for candy and playing in the tire swing. I liked the rice and whoopie pies. - Amy Zimmerman (MSUD)

We really enjoyed it; was a nice place to have the picnic. The food selection was good. Good turnout! John and Verna and their families did a wonderful job! - Brenda Wenger

I had a lot of fun at the picnic. We should do it again soon. - Idann Hoover (MSUD)

I enjoyed the hike down to the canyon but not up! - A Sibling

We didn't know a lot of people, but we sure look forward to getting to know you better. We enjoyed the picnic and so did the children. We liked hearing the experiences of others; each one is different. - Kevin & Dawn Hahn


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.
Donate Today Learn More

Subscribe to our mailing list

Signup To Our E-Blast Signup with your email address to receive our e-blast newsletter.