Fortunately, much has changed in the past 25 years and the diagnosis of maple syrup urine disease is handled and not construed as the end of the world. When I was born in 1988, the diagnosis of MSUD (if diagnosis took place at all) signified the beginning of an impeccably scripted horror story that was about to begin. In general there was lack of knowledge by virtually every doctor you would come across and utter frustration (mentally, physically, and even financially) for both the parents and child. I was one of the lucky ones. I was diagnosed at 16 days old and was treated just in time leading to no permanent damage, but it was not easy on my parents. As I look back on it, it was a nightmare for them those first few days, weeks, and years as they tried to pay for my medications and keep me healthy.  As rough as it was they persevered and I survived.

By the time I reached the seventh grade, I was curious about “what was wrong with me.” I knew I was not allowed to eat any pizza or hamburgers, and I had been in and out of hospitals. However, I still knew little more than that. That spring, my biology teacher assigned open topic research papers. Mine…was MSUD. I began reading and learning and for the first time I had an idea about MSUD. I can honestly say I appreciated understanding a great amount of the details that seemed unclear at the time. I now may have even known more than my parents. However, the true benefits would come from the research itself. Until then I viewed science as just another class that was pretty easy, and I was pretty good in it. The class I had really enjoyed was math. However, following that project I developed a passion for science, in particular the biology and the chemistry. Fast forward 18 years, and I have graduated from the Georgia Institute of Technology with a degree in Biochemistry with honors, and am currently pursuing a PhD in the field of analytical chemistry at The University of Georgia.  Yes, being born with MSUD is difficult for all those involved. It is difficult road, but in my case it also shaped who I became. That day in seventh grade, if I had not found a project that inspired me…who knows? I may have been a mathematician today.  Life with MSUD has lead me to this. So, as tough as it may be, MSUD is a part of me in more ways than just a disease. So, as tough as it may be, just remember: Keep looking. Every cloud has a silver lining…I have found mine.

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.

Read More

Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

Read More

In The Professional Journals

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

Read More

Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

Read More

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.

Read More

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.

Read More


A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates