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.

It was clear from the early days that something was wrong. Artur stopped eating, became lethargic, and began having spasms. Initially Artur was diagnosed with Leukodystrophy, but his father did not believe this was the correct diagnosis. He then insisted on obtaining other professional opinions and finally his son was properly diagnosed with Maple Syrup Urine Disease – MSUD- at the age of 31 days. Many were the challenges that they faced. They went financially broke in a very short period of time. Literally, their lives turned upside down. “Sweet Odyssey” tells the story of this family’s journey.

As Dr. Kevin Strauss director of the Clinic for Special Children says on his book-forward message “Sweet Odyssey tells a similar tale when compared to the legendary King Arthur. The only exception is that Sweet Odyssey is a true story and the main protagonists young “King Artur Santos” and his father Idario Santos are reallife heroes made of flesh and blood. In Sweet Odyssey, you will learn that the challenges faced by the mythical King Arthur pale in comparison to those overcome by one courageous young boy and his family…”

The Santos family traveled all over Brazil looking for better treatment for their newcomer. Their luck started to change when the MSUD Family Support Group invited them to the 2004 bi-annual symposium in Atlanta, GA. A little over one year later, Artur Santos became the first Brazilian to receive a liver transplant and was freed from MSUD. Since then, the Santos family advocates for those in need.

Sweet Odyssey co-author Vinicius Santos, Artur’s brother, states, “In Brazil, only a few diseases are tested for through the newborn screening program and diseases like my brother’s are not detected. Even worse, some other countries do not even have a newborn screening program...” That’s why his father wrote a law entitled “Artur Bucar Santos Law” which was presented to the Brazilian House of Representatives. The law is in the evaluation process and is protocoled as PL7674.

Dr. Harry Hannon, former Chief of the newborn screening branch at the Centers for Disease Control and Prevention says, “The reader of Sweet Odyssey learns that life’s struggles require an enormous amount of faith and perseverance to perhaps achieve success -- no guarantee, but certainly one gains greater strength for future challenges. I strongly recommend this book to all parents, grandparents, newborn screeners, and healthcare professionals as a must read!!

“The fight is not over,” Says the co-author Vinicius. Children suffering from genetic disorders still need our help. 50% of proceeds from Sweet Odyssey will be donated to the Clinic for Special Children.

Short Biography
Born in Prata – PB, Northeast of Brazil, Idario received his college degree in 1993.

He works as an agronomist in a vibrant city of Petrolina – PE. Early in his career Idario Santos was awarded a Certificate of Excellence by the Brazilian Board of Agronomy, known as CREA due to his important work as a consultant to fruit exporters of the São Francisco River Valley.

Author of the true story Sweet Odyssey, Idario Santos launched his book in Portuguese at the American Chamber of Commerce in São Paulo – Brazil. The book is now available in English via or in bulk via

Idario Santos wrote this book in hopes that it will be used as an inspirational tool and that it will help children and their families suffering from MSUD and other genetic diseases.


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.

Read More

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.

Read More

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.

Read More

NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More

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

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