What the families had to say

Written by Joyce Brubacher

Saturday, December 17 1994 06:47

Tags: Conference Reviews Sharing Section

The symposium was an interesting meeting for us. We did not realize there are so many families with MSUD children. Making new friends and meeting old ones was the highlight of the Symposium for us. The professional talks were very informative, too. We had an enjoyable trip. - A father

We enjoyed being at the Symposium. It was very well organized and the facility was ideal. We were encouraged to see other families with MSUD children have a normal family life. - A mother

We treasure the time spent with other MSUD parents and friends. The speakers did their duty to educate us about new products and ideas. It was refreshing to be reminded again of our parental duties in caring for our children. - A mother

We had a very enjoyable time visiting with the parents once again. It was well organized and each speaker was interesting. We need all the encouragement and advice we can get to care for these children. We also thought the motel was a great place to have it. - A mother

It was a well-organized conference with very good speakers. The facility was great. We could not ask for better accommodations and they had a pool! Next time I wish they would request notes from the speakers and distribute them to the group so we can follow along and keep the notes for later use. - Mary Ann Peters

I felt really welcomed at the Symposium and was very impressed with Dr. Holmes Morton. I found the information on glutamine and isoleucine supplementation fascinating. I took a lot home from this conference that I have been able to put to good use in caring for our son. I learned not to view the "formula" as such, but as a normal diet requirement that has now been renamed by our seven year old as Mike's Maxi-Milk. He was getting upset that people would think he was a baby if I called it formula. - Anna Toth

It was interesting to be there and realize we are not alone in caring for these children. We enjoyed the speakers, especially Neil Buist. He made us realize how far they have come in treating these children. We have many good memories. - A mother

Even though the 1994 Symposium was a first for us, it will never be the last if God permits. We so thoroughly enjoyed it. We enjoyed the speakers and gaining new insights and knowledge about MSUD, but most of all, it was a thrill to see someone else in our boat.
It was so "weird" not to have to explain what MSUD was to everyone we met. We felt such a kindredness to everybody. It was like a big family. We were so uplifted to see so many kids that were doing so well. All of the children were beautiful.
We'll never forget meeting our first new friend with MSUD. After we arrived at the hotel, we were hoping we were at the right place. We decided to take a swim. Sherwood started talking to a little girl who was swimming and playing with her brother. When he found out she had classic MSUD, he and I were overwhelmed. She was so perfect. This was Leanna Peters. Then, of course, we met her mother, Mary Ann who knew all about MSUD. From there on, we kept being overwhelmed. It was a wonderful, fantastic experience and we recommend everyone participate at the 1996 Symposium if at all possible. It gives you new hope to come home too. Thanks again for all of the hard work. Hope to see you in Ohio. - Sherwood & Sonya Webb

I could not do justice in a Newsletter to the material presented at the Symposium. There was so much of value and I hope many of you will take advantage of the videos. One mother arrived home from the meeting to find her daughter ill. She told me the information she had heard was extremely valuable in helping her provide adequate treatment for her daughter. She thinks the outcome could have otherwise been disastrous. Others have testified to the improvement in their children since they have a better understanding of the diet and its role in MSUD.

For most families, sharing on a family to family level is so refreshing, as attested to in the personal notes above. And there are always times of humor; one being the swimming pool incident.

A father attending the Symposium was supervising his child in the pool when he began a conversation with another father staying at the motel. He mentioned that many of the children in the pool have maple syrup urine disease. The other father quickly motioned to each of his children to come out of the pool and they left. The next day or maybe that night, I am not sure, the pool was loaded with chlorine tablets. Several fathers threw some out but enough was left to burn the eyes of the swimmers. It wasn't until the meeting was over that some of the parents began to wonder. Did the "urine disease" have anything to do with the highly chlorinated pool?

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Last Updated ( Friday, July 17 2009 06:52 )