Greetings from Texas! I am Becky Sanford, former foster mother to Dalma. Those of you who attended the July 2002 MSUD Symposium in Michigan might remember that I put a picture of a little girl named Dalma on the overhead and said that I was looking for loving, Christian parents to adopt this beautiful little girl with MSUD. I explained that Dalma could really benefit from doctors who are innovative and up-to-date on MSUD. This is the beginning of the story of our life with precious Dalma until she became the daughter of Amos and Edna Newswanger from Pennsylvania. [See next article for Amos and Edna's story.]

My cell phone rang in May 1999, almost exactly four years ago from the day that I am writing this. Child Protective Services of Texas (CPS) asked if we would take a little girl as a foster child. CPS explained that the baby was a few weeks from being one year old but wasn't able to sit up yet. They thought she was a "failure to thrive" child. Her name was Dalma.

The timing wasn't good. My mother was dying of cancer, and I was spending almost 20 hours with her each day. I talked to my husband and oldest daughter because they would have to care for her since I was so involved with Mom. We agreed that it was "do-able," so I went to the CPS office to pick her up.

I expected to see a frail, thin, sickly little girl, but Dalma was average size for her age (almost a year old). She had a very bad skin rash and couldn't roll over, sit up, or hold her head up. She couldn't lift her arms or legs, didn't make eye contact at all, and made only moaning sounds. She just broke my heart.

The caseworker said that Dalma's grandmother told them to tell me to feed her only baby food vegetables and fruits and watered down milk, or she would "be sick." (Now I realize how attentive her birth family was to her because they created a personal diet to help her. Amazing!)

I took her home and proceeded to give her formula which made her "be sick" - just like the grandma had said. The next day I called my pediatrician because, after caring for several "failure to thrive" children, I knew that we were dealing with something more than "failure to thrive" here! He informed me that he was going out of town, so I asked him to make an emergency appointment for her at Cook Children's Hospital in Fort Worth (two hours away) with a neurologist. He did!

On day three, we met with Dr. Ryals, and he agreed that something was definitely wrong with Dalma. He called me on day five and said he had learned from her blood work that she had maple syrup urine disease. He had never seen a case but found a metabolic doctor in Dallas who had treated a case.

The metabolic doctor called and informed me to eliminate all protein from her diet until we could see him first thing the next day. On that visit the doctor gave me Ketonex I and a Ross manual on MSUD. I was told to come back in one month for more blood work. I had never heard of MSUD and felt completely overwhelmed! (Each of you knows that feeling!)

The following day while I was with my mother, she regained consciousness and asked about the children, so I told her about Dalma. She was so pleased that we had taken her because she knew that we had refused three other children that month so that I could spend time with her. She went to be with the Lord exactly one week after Dalma arrived.

The timing for Dalma's arrival had to have been from God. She flourished on her new formula. Slowly her skin began to clear up, and within a month she could hold her head up. She still had a floppy baby body, but she was starting to smile and make happy sounds. She even started physical therapy and speech therapy (much to her dismay).

Dalma's physical age was still "in the womb" due to the fact that she had no muscle control whatsoever. She did not like doing therapy at all, but we were soon seeing progress. At a year old, Dalma learned to tolerate being on her stomach and to wiggle her arms and legs. Slowly she learned to grasp our fingers. We cheered at every new level of achievement. Soon she learned to make baby sounds. Dalma now smiled when she was happy and learned to roll from her stomach to her back.

By eighteen months, she had progressed to the "army crawl" with her arms dragging her legs. At two years old, she could finally sit alone. We heard her first words of Nana (for me), Nat-a-le (for Natalie) and nite-nite. To be honest, they all sounded alike, but Natalie, our four year old, knew what she meant and interpreted for the rest of us. At two years, Dalma could crawl, wave bye-bye, give sloppy kisses and was the light of our lives.

Dalma turned three in June of 2001, and in August she started Early Childhood Intervention at our local elementary school. She went to school in the mornings from eight to twelve. By this time Dalma had a walker to help her cruise the halls and had charmed all of her teachers with her vivacious personality and happy smile. Her nickname was Nosey Rosy. While her physical condition had improved dramatically, her mental capacity hadn't made as much progress. For the first time in her life, she learned new tricks - like how to throw a fit, bite, and destroy the teachers' desktops at school! Up until now, she had been in toddler mode, but now she was able to walk and reach anything and everything.

As most of you know, attending school creates a whole new problem of lunches and snacks! For a few months I just tried to pick her vegetables and fruits from the school lunch menu but soon realized it was much easier (for better control) to pack her lunch every day. Dalma had a huge problem with chewing. She refused to do it, so we just mashed all of her food so she could swallow it.

I attended the MSUD Symposium in Michigan in July of 2002. At this conference, I realized that maybe if Dalma's diet was changed and her levels were monitored more closely, she might improve even more. Dalma was not on any supplements to help with her levels. When I told the people at my table and a couple of the Symposium speakers what her levels were, they were concerned. I learned that there was a lot of new information that my doctor in Texas would not use. His line was that she was so much better than when we first got her. But my question was, "How much better could she be with more aggressive medical care?"

At the Symposium, when I made a plea for an adoptive family for Dalma, three families expressed their interest and asked for additional information. This is where Amos and Edna Newswanger entered the picture. They were very interested in adopting Dalma! We were so excited. We visited by phone several times after the Symposium.

Then in October of 2002, Dalma, Natalie (my six year old daughter) and I packed up our Suburban and headed toward Amos and Edna's to stay a few days with them. We also wanted to meet Dr. Morton and visit the Clinic. It was a long, beautiful drive, and the girls did great! It was about 1500 miles and took us about 23 hours. We never got lost until we were within a few blocks of Amos' house!

Amos and Edna welcomed us with open arms. We visited Amos' woodworking shop and Edna's fabric store, and we rode in their horse-drawn buggy. We stayed in their home and enjoyed fellowship with their church members and other foster parents and visited with their son Neil and their daughters. We enjoyed meeting Dr. Morton and visiting again with Dr. Kevin Strauss. It was such a wonderful trip.

We brought Dalma back home with us, and by that time all the paperwork for an interstate adoption had begun. In December 2002, our caseworker, Mr. Bill, flew Dalma to Pennsylvania. (I wish I could have been a fly on the wall!) Dalma remembered Amos and Edna, and the rest is history in the making. I am so grateful for Amos, Edna, and their loving family. God is good!!


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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