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This article was adapted from an article Angie Perdue wrote about her daughter Tangi in an effort to alert the public to the need for newborn screening for MSUD. She is involved in a personal campaign to get Texas, her home state, to screen for MSUD. This is the sad story of Tangi's delayed diagnosis.

newtangi.jpgI was seventeen when I became pregnant with my first child. There were no complications with my pregnancy. I gave birth to a baby girl on August 7, 1996 at the age of eighteen. Her father and I decided to name her Tangi after a girl on Buck Rodgers. Neither of us knew it then, but our world was about to change.

The minute Tangi was born she began crying nonstop. That did not alarm me, but then she kept crying and arching her little back. I knew the sound of a baby's cry, but this was different. It was more like a scream than a cry. Being a new mom, I was scared - scared to hold her. Deep down inside I could sense that something was wrong. She looked normal; she just did not act normal.

When my husband and I brought Tangi home from the hospital, we stayed with my mom so that she could help me care for Tangi and teach me a little about how to be a mom. After all, she raised seven children. She was an expert in my eyes. That first night at Mom's was a nightmare. Tangi cried nonstop. She would not suck her bottle, would not sleep, did not urinate, and she was still arching her back.

I was raised in an Assembly of God Church, and God was no stranger to me. I knew that God was telling me something was wrong with this baby. We took Tangi to the emergency room two or three different times those first couple days as well as to the pediatrician. Our baby was getting worse. We took her to the emergency room again when she was three days old. This time they did some tests and a nurse saw Tangi having a seizure. From the test results, the doctor thought she was having some brain problems. They decided to send Tangi to a hospital in Galveston for more tests.

I was very scared. I remember sitting in the hospital room at my daughter's bedside looking out the window up into the heavens and asking God why? What have I done to deserve this? It was not supposed to turn out like this. Why my daughter? My mom came and sat beside me crying. I just looked at her and said, "Why? What did I do?" She said, "Angie, God is in control of this situation. Who knows why God does things or allows things to happen. God has a purpose for everything, even though you don't understand or may never understand. Remember God is in control." When the nurses brought Tangi back to the room, I held her and said, God this is your child, not mine. I knew my job was to raise this child for God.

In Galveston, Tangi was put in the neonatal intensive care unit. We waited for hours not knowing what to expect. When we saw her again, it was a scary sight. She was hooked up to so many wires. Test results showed Tangi's brain was swelling. Why? The doctors did not know.

Tangi eventually went into a coma. My aunt called and told me that God had given her a message for me. God said that this child is not of death. I cannot put into words the joy that I felt. It was like someone was right there in the room with me. In my spirit I could feel Jesus giving me this huge hug. I needed that; it kept me going. Deep down I felt God was telling me that everything was going to be okay.

The circumstances did not look good. The doctors said that if our daughter came out of the coma, more than likely, she would not be able to see, hear, speak or even walk. But I remembered what God had said, "This child is not of death." I held onto God's word and thanked Him every day for that.

Then at one month of age a test result showed Tangi had a rare metabolic disease known as maple syrup urine disease. I had never heard of it before. The doctors put her on a special formula. After a week, she came out of the coma. Thank you Jesus! Now was the time for her father and I to learn about this disease and how to care for her. It took us a month to learn how to make her formula and learn what foods she could eat.

It was very scary to bring our little girl home when she was three months old. We lived two hours away from my mom and any of our family. I knew God was looking over our little girl and was right there helping us, because He did not take her home to be with him when she was so sick.

At first I prayed every day for my daughter's sight, speech, hearing and ability to talk, but then I started thanking him for those abilities. We had noticed Tangi staring at the light and her eyes would flutter when I shut a cabinet door. God gave me dreams of Tangi as a normal little girl. I held on to my dreams.

Tangi's care was transferred to Baylor University Medical Center in Houston. She was doing okay until she became sick when she was six months old. She was admitted to the hospital, but I soon sensed she was getting worse. She had a rash under her neck and on her bottom. It was no normal baby rash. It looked awful and so painful. No one knew what caused the rash.

My mother-in-law called and told us of a doctor in Lancaster, Pennsylvania who specialized in treating MSUD. After speaking with Dr. Holmes Morton on the phone, and praying about the situation, I knew I had to get Tangi to this doctor. The question now was how? We had no money. I had never flown or even been out of the state of Texas before. I prayed and put the situation in God's hands. Two days later our friend's father gave us the money to fly to Pennsylvania to see Dr. Morton. Now I had to convince the doctors, as well as my husband, to let me go. They did not approve. My husband thought she was okay where she was and did not feel comfortable with me and a sick baby traveling alone. I could understand that. However, I also knew that God wanted me to go; so that's what I did.

Tangi and I flew into Pittsburgh, Pennsylvania. My mother-in-law and sister-in-law picked us up and drove us to Lancaster to meet with Dr. Morton. Dr. Morton admitted Tangi into the Lancaster General Hospital. We stayed there for a month. He checked all of her amino acid levels and straightened them out. Tangi was like a new baby - no rashes or anything. She looked great. Dr. Morton and his staff took excellent care of Tangi and I both. I had never been to a doctor who loves his patients and cares for them as much as Dr. Morton. He truly loves and cares for these children with rare diseases. He stayed at the hospital with Tangi all day and through the night. That is dedication, and I thank God every day for putting Dr. Morton in our lives.

Tangi is almost seven years old. She can see, hear, speak and walk. Thank you Jesus! She plays outside on the swing set with her younger sister and enjoys life. Tangi does have learning disabilities. She is hyperactive and cannot stay focused for a long period of time. She recently learned how to count to ten. She is behind in some areas, but does some things better than we expected. We are very proud of the progress she is making.

We see Dr. Morton at the Clinic for Special Children twice a year for check-ups. Tangi has a Mickey Tube [another name for a G-tube or gastrostomy tube] in her belly for the formula. She refused to drink her formula anymore, so Dr. Morton thought it would be best to use a Mickey Tube because Tangi is his patient, and we live so far away in Texas. Since she is under Dr. Morton's care, we have not had any serious problems.

God told me He was going to heal Tangi of MSUD. I don't know how or when, but I know that He has a plan, and He will heal her. I ask that when you pray, you help me thank God for what He has done in my daughter's life, and what He is going to do in the future.

Tangi's bad experience could have been prevented if she had been diagnosed at birth. Some states screen for MSUD, however, Texas is not one of those states. It needs to be. More doctors need to learn about MSUD. It is surprising how many doctors have never heard of this disease. It is rare, but people need to be aware of it.

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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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