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
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.
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 www.amazon.com or in bulk
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
- Category: Volume 35-2