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...

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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A Child's Life

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