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See From the Heart of the "Other Mother" for background information on Dalma.

On December 11, 2002 we became foster parents to a four year old girl with MSUD named Dalma. She came to our home all the way from Texas. We also have three married daughters and a son Neil, 21, with MSUD. [More on Neil in editor's note at end of article.]

It was only through God's leading hand that we found out about Dalma. When we signed up for foster care in October 2001, we applied for special needs children. We realized that all children who come into the agency have special needs, but we were willing to take the ones with extra special needs - the ones most people don't take as foster children. We were approved in February 2002, and five days after approval we were given two girls ages three and four. They were a challenge. The one is still with us, and the other left after staying six months.

In July my husband Amos, our son Neil, and I attended the MSUD Symposium 2002 in Michigan. We heard Becky Sanford, a foster mother from Texas, tell about Dalma and ask if someone who is familiar with MSUD would give Dalma a home. Amos and I looked at each other and knew right away we would give Becky our name. What really touched me and caused me to choke up was the poem Becky had on the screen:

dalma.jpg Dalma in her new home with the Newswangers
What Matters

One hundred years from now

it will not matter what kind

of car I drove or what kind

of clothes I wore.

All that will matter is that

I made a difference in the

life of a child.

- Author unknown

When we talked to Becky, we were amazed at how much Dalma seemed to be like our son Neil. Her delays were so similar. Our hearts went out to Dalma with her needs, but we didn't want to get our hopes too high. We knew others might ask for her also.

We didn't hear from Texas for a couple months. One day Amos called Becky. She said our name was given to the adoption agency. We waited again. Then Becky called and said she would like to bring Dalma here for a visit.

Becky, with her seven year old daughter and Dalma, arrived for a visit in October. She drove all the way from Texas with the two girls. Dalma was 4 years old and made herself right at home. She had no problem adjusting to Neil or to the other foster children (a girl four and a boy six and one half months old). It was an interesting and busy week. Some of the other mothers with MSUD children in the area came to meet Becky and Dalma. Foster parents from this area also stopped in one day. We even managed to visit the Clinic For Special Children in Strasburg so that Dr. Morton could meet Dalma. [He is Neil's doctor.]

After Dalma's visit we wondered how long it would take for all the paper work to be done. The agency in Texas was trying to place her here for Christmas. We waited patiently but were eager to get her settled in before winter.

I remember telling my husband one day, "I really wonder if it will happen. Maybe we should call again." He said he had decided if it was the Lord's will for her to come, she would come. That same day we got a call from Texas saying everything was going through as planned.

Then on December 3, we got a call from a caseworker named Bill. He planned to fly with Dalma on December 11, leaving in the morning and arriving around 6:30 in the evening. He would stay in Pennsylvania for several days visiting family after leaving Dalma with us.

When the big day finally arrived, everything was covered with ice, and our local airport was closed. Bill called as they were getting started on their journey. He was surprised to hear we were having a winter ice storm. We hoped the weather would be better later in the day, but it didn't change much. Bill called again and asked if we had a jacket for Dalma because she only had a light-weight one for Texas weather. He said he would stay in Pittsburgh for the night if necessary. We kept calling our local airport, but there were no flights leaving or arriving. Then another call came just when it was time for us to leave for the airport. Amazingly, the only plane arriving that day was the one with Bill and Dalma! Although a little late, they arrived safely. God's protecting hand was over them and our prayers for a miracle were answered.

Amos met Bill and Dalma up at the airport. I stayed home with the children because of the icy weather. Dalma went right to Amos for a hug and was all smiles. When she walked into our kitchen, she made herself right at home and checked everything out. She had no problem settling into bed that night.

momfrompa.jpg
Edna Newswanger - photo taken at Symposium 2002

The next day Bill stopped in for a visit before leaving. When he prepared to leave, Dalma backed away as though she was afraid he might take her away again.

Dalma adjusted very well to our family, and Neil was excited too. We could tell he thought it was great that she drank a special formula like he did. He wasn't impressed, however, when she wanted all of his attention after he came home each day from the adult training facility he attends. Dalma would go around in circles in front of Neil and laugh or hang on to the pockets on his pants. Sometimes she would sit on the floor right in front of him and make noises. He wouldn't pay much attention to her until it got to be too much; then he would say, "Dalma!" quite loudly to let us know she was pestering him. After a month of this, Dalma decided she wasn't getting the attention she wanted and quit.

Dalma greatly improved as days went by. We had to find the level of leucine she tolerated. We started at 300 to 400 mg and continued increasing it up to 800 mg per day. Then gradually we had to back down to 650 mg of leucine. At first we were sending blood samples to the Clinic every week but later changed to every other week.

Dalma had an ear infection and ran a high fever soon after she came to us, but she took her formula and kept eating. We had no serious problems through those illnesses. Our other four year old had scarlet fever, but thankfully, Dalma didn't get it.

A month after she arrived, Dalma started going in the mornings to a preschool for children with developmental delays. She turned five on June 19, 2003. We think she has shown improvement in a number of ways. Her speech is limited, but she has a few words others can understand. She called me mamma right away, and Amos is da-da. She didn't act as if the great amount of cold and snow we had this winter was anything new. She plays nicely with toys for short periods of time. Our other four-year-old leads her around everywhere, and Dalma goes right with her - most of the time. She is usually a smiling, happy girl.

We are thankful to Becky for attending the Symposium and pleading for someone to give Dalma a home. Becky was brave and trusted someone was there for Dalma. We feel very fortunate to have this very precious, special girl to care for. We can only do this with the help of our heavenly Father. We never dreamed we would get a child with MSUD when we signed up for foster care. Although foster care was all we were going to do, we plan to adopt Dalma in the near future. The Lord moves in mysterious ways. We need to take only one day at a time.

Amos and Edna Newswanger, a Mennonite family who live in Martinsburg, Pennsylvania, have a wealth of love for special needs children. Their only son, Neil Ray, was born July 28, 1980. His case was unusual in that he survived a very late diagnosis even though he has the Mennonite classic mutation of MSUD with zero enzyme activity. Neil had the early classic symptoms of MSUD and was hospitalized off and on until diagnosed at 6½ months of age when he was in critical condition. Undiagnosed children with this mutation usually die within the first weeks of life.

Neil was hospitalized a number of times during his childhood and suffered extensive brain damage. Since then he has grown to be a strong and physically healthy young man. He communicates mostly with grunts and words understood only by those close to him. His highest level of development is in his gross motor area. He can walk and enjoys being outdoors and swinging on an outdoor swing. He is particularly fond of pens and toothbrushes. He has a collection of over 500 toothbrushes. He remains on seizure medications and works in an adult training facility. He now has a sister with whom to share MSUD experiences.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

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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