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...

In The Professional Journals

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

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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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A Child's Life

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