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Some of you may remember Ron and Andria Merrill who attended the Colorado and Pennsylvania Symposiums. We were disappointed when issues of the Newsletter were returned with no forwarding address. It is good to welcome them back into the organization and print this updated information on Ryan.

Dear MSUD Family,

It has been a long time since we have heard from you. We lost track of the Newsletter through all our moves over the years. Because it has been so long, I thought you might like a brush up on Ryan's life over the past years.

Ryan was born on June 12, 1982 in Bountiful, Utah-the only child with MSUD in Utah. I was 18 years old and Ron, my husband, was 21. What a shock! He wasn't diagnosed until he was six weeks old. We had him in Primary Children's Medical Center (PCMC) two of his first six weeks.

During the second admission after testing for everything possible, they ran the test for MSUD. It came back positive. We didn't understand the disease at all.

Ryan had symptoms similar to your children-rejecting formula (Similac), constantly crying, weight loss and dehydration. He wouldn't open his eyes and seemed in constant pain. After he was diagnosed, we spent approximately three months in PCMC.

During this time we met Metabolic Specialist, Dr. Claire Leonard, who works out of the University of Utah Medical Center. During those three months with her, we learned how to take care of Ryan. I was so overwhelmed. I think I aged about 10 years in three months.

When we took him home, it was one of the greatest moments in my life. I didn't have to share my baby with a nurse or doctor. We could finally start the bonding between mother and infant. The Lord truly blessed us. Our son was alive and doing well.

Of course, over the next three years we had our many visits to PCMC. Most visits were for high protein levels or low glucose levels. There were a few times we almost didn't bring Ryan home with us. Ryan has classic MSUD with the complication of low glucose. When Ryan becomes ill, we often end up at PCMC-usually for only a day.

As Ryan grows older, he seems to take a longer amount of time to bounce back. We now have spent up to four days at PCMC. No matter how old he gets, it doesn't get easier. I don't ever leave his side. I want to be there if the Lord calls him home.

Ryan attends a "normal" school. He mainstreams 50% of the day in his normal 6th grade class. The other 50% is spent in a special class for the disabled. Ryan is 12 years old. He weighs 52 pounds and is 50 inches tall. He loves to play basketball and very rarely misses a UT Jazz game. He had the opportunity to go to the Jazz games and meet some of the players. Due to some brain damage at birth, he has spastic ligaments and hamstrings, but is walking on his own after having approximately seven surgeries.

Ryan has two healthy sisters that he loves to torment. We know the day will come when Ryan will return to his Heavenly Father. We pray that the Lord will continue to trust us to raise one of his special children, for he has touched our hearts forever.

- All our love, Andria & Ron Merrill

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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