We were in Pennsylvania for the holidays when we received word that Tony Casey had passed away. It was such a shock. We like to think that persons with MSUD have passed through the critical period of their lives by the time they are in their late teens or surely by young adulthood. Tony was born on Nov. 1, 1973 and turned 20 just two months before he died on the morning of the 31st of Dec., 1993.

The Casey family had shared their history in our Feb. '85 issue of the Newsletter. Of their nine children, one son and three daughters died of undiagnosed MSUD. When her youngest son Tony was born, Donna became uneasy by the 5th day. Tony was not feeding well, just as the other four siblings had acted. Because of her concern, the doctors admitted him to the hospital. He was diagnosed at nine days of age.

In Donna's earlier account, she relates what she said when Dr. Ampola told her about MSUD. "I have learned something that I figured I would not know until I stood before our Lord and could ask him, 'What was wrong with all our babies?'"

Tony had the benefit of current health care and did well. He was a highly motivated young man and well liked by those who knew him. Following is an account of his sudden decline and death written by his mother on Feb. 7. We extend our deepest sympathy to the Casey family who has suffered so much. May their faith in the Lord continue to strengthen them.

I have had a very difficult time expressing my feelings on paper. We are still trying to grasp the reality of Tony's death. We miss him so much. He was our life. Everything seemed to surround him. He kept us on the go and thinking young.

Tony graduated from high school last June and was enrolled as a carpentry student at a vocational school in Augusta. He loved school and never missed unless he was sick, which wasn't often. He also loved country music and knew all the songs and the stars. He was very outgoing and friendly and everyone commented about his smile.

He belonged to the youth group at our church and was to have gone to Long Beach, California on Dec. 27. The youth group went to a gigantic youth rally there. They had worked hard all year to raise money to go. We knew the week before that he could not go as he wasn't feeling well.

On Sunday, Dec. 19, Tony was in an accident with his brother-in-law. He was shook up and complained of a stiff neck. Otherwise, he was fine. On Monday, he ran a fever. I took him to the doctor that evening, who checked him and thought he had the flu. On Tuesday, he was no better, so they ordered an antibiotic. By Wednesday, he was over the fever, but still didn't feel good. He refused to eat or drink much and vomited after eating.

On Thursday evening he wasn't much better, so we returned to the doctor. We just got in the office when he started to hallucinate. This was the first time he realized that he was hallucinating and he started to cry÷something he never did before when he hallucinated. I told him to hug me and it would soon go away. He did, and it did for awhile. They immediately put him in the hospital and started an IV. He got upset with me once and pulled it out. So they sedated him and put it back in. By the next morning he was much better, and that evening, being Christmas Eve, they let him come home. He vomited the French fries he had eaten.

By Tuesday of the next week, he was still not feeling much better, so I called Dr. Ampola, our doctor in Boston. She advised me to take him back to be checked and have blood work done again. After checking him the doctors were sure it was sinusitis and gave him a new antibiotic. He was complaining of a headache. (He had problems with frequent headaches and sinusitis.) All tests were normal.

Wednesday evening, Tony asked if I were going to take him to the hospital. I guess he thought he should go back. Thursday, my husband was admitted to the hospital with flu and fever. While I was at the hospital, the pediatrician's office called and asked how Tony was doing. I called them back and expressed my concern. They decided to check him again.

He took a bath and I helped him get dressed. As I patted his hair dry he complained that the top of his head hurt. His right eye looked droopy to me. He was dehydrated and they put him in the hospital again. He walked into the hospital and signed his own papers. They put in an IV, and he went to sleep. I left him and came home. (My heart aches to write this because, I wish I could have been with him when the Lord took him. But I guess the Lord knows how much we can handle.)

They told me later Tony continued to complain about his head, and they put ice on it. His belly also hurt. At 2:00 a.m. they called the doctor and told him that Tony was complaining about his head and he ordered Tylenol with codeine. Then he went to sleep. The nurse checked on him at about 5:30 and found he was in trouble, (they didn't go into detail with me about it), and they called a code. It was too late. He died as they worked on him. One nurse who was with him and knew him personally took it so very hard.

My husband came home from the hospital Saturday. He really wasn't ready, but the doctor knew he needed to come home. They performed an autopsy on Tony and we donated his eyes, heart valves, and some of his bones. It was a very hard thing to do, but we know he no longer needed them. He has a perfect, whole body now, and of course, we always say÷now he can have his hamburgers. The autopsy showed there was brain swelling and his lungs were full of blood.

On Monday, we had a beautiful service for Tony. I have two sons-in-law who are ministers. One of them spoke of his qualities, and the other read a letter that the nurse who was with him had written. It was very touching. Our pastor talked to the people about Tony and their need to get right with the Lord. A wonderful Christian lady friend sang two songs, "How Great Thou Art" and "Because He Lives."

As I write, I am trying to recall how often Tony was in the hospital. His first time, after his initial stay at Boston, was when he was 13 months old. He had an eye infection, and they put him in the hospital as a precaution. He was fine. When he was about 3 years old, he had a bad illness. He didn't know us and he couldn't sit up. After about two days on IVs, he bounced back fine. This happened again when he was about 9 or 10. He had his appendix out when he was about 8 years old. He came through that with flying colors. Then he was in the hospital when he was 15, because he had stepped on a nail. He had no problems with that either. All in all he was very healthy.

We are still having a very hard time÷missing Tony. As our pastors put it, we are experiencing a double whammy; not only are we grieving but experiencing the "Empty Nest Syndrome" also. I guess they are right. Tony was still very dependent on us.

He was such a normal, good boy that we are having a hard time understanding why our precious Lord chose to take him home at this time. But we also know the Lord has all wisdom and can see further down the road and what might have been in store for him there.


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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