When my husband Bryan and I had Matthew on February 14th, 1998, he was a perfect baby. Eventually my sister noticed that there was something wrong. He wouldn’t move his head for noise, eat, or let me breastfeed. When he lay on his back he would let out a long cry. He slept in his car seat for awhile with his eyes fixed. I was getting very scared and decided to take him to the E.R. He stayed in the local hospital in Taylor County for 3 days but they didn't know what to do for him. Finally, his pediatrician decided to send him to Kosair Hospital in Louisville, Kentucky where he stayed in the ICU for about 2 weeks. By the time he was diagnosed with MSUD, his levels were in the 2,000s, he was in a coma and his brain was swelling. He was finally treated and after about a month we were able to go home.

Matthew now is in 3rd grade and just turned 10. He is doing well and has not been in the hospital for 3 years. He is wearing glasses so he can see better. My husband and I were scared to have another child, but 2 years ago I gave birth to Hanna, who does not have MSUD. Matthew loves her and both children are healthy.

Since Matthew is older it is easier for us to do things, but it is hard to eat in restaurants because of the way they cook. At home he gets all the formula and foods he needs. He is learning each day how to take care of himself but he still doesn’t understand why Hanna can have what we have and he can’t. He always says "I wish I could have that."

It is hard sometimes. We learn more and more each day. I have to thank his doctors and nutritionist for all their help. The staff and kids at school all know about Matthew, and they call me to ask if it is OK for him to have cup cakes or other things. I have learned to eat what Matthew eats and I try to encourage him to eat his food. I always tell him that God made him special and we love him and want him to take care of himself. And this is Matthew's Life...

MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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A Child's Life

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