Early diagnosis of any genetic disease has the potential to prevent severe health problems, including the most extreme condition, death. Newborn screening has evolved to the point that over 50 different genetic conditions can be detected. However, only a few countries have implemented a comprehensive testing program and the number of tests done on a routine basis can vary within those countries, depending on state requirements. For example, according to “Empresa Brasileira de Comunicação - EBC”, in Brazil, more than 13,000,000 people suffer from some type of genetic disorder, like my brother. There, the number of screening tests also varies from state to state, with an average of only 4 genetic disorders being tested. In some other countries, this type of testing does not even occur. Newborns from around the world are lacking a proper newborn screening. The neglected children suffering from genetic disorders need your help. Let’s give them a chance. “Sweet Odyssey” will teach you how.
Born in Fortaleza – CE, Northeast of Brazil. Vinicius was two when his brother Artur was born with a rare genetic disorder that left him unable to process certain food proteins. When his family learned that Vinicius’ brother could be cured, they moved to Pittsburgh-PA in the summer of 2005. After three months attending Sacred Heart Elementary School, Vinicius quickly learned a new language and became fluent in English. At this time, his brother was into a deep coma and his parents could only speak their native language of Portuguese. At age of five, Vinicius turned himself into the most valuable asset for his family as a translator. Today, he is trilingual with fluency in English (his primary language), Portuguese and Spanish.
Co-authoring the book Sweet Odyssey, Vinicius ghost wrote his father’s thoughts, reviewed the grammar and construction of his family memoir. He is also a co-author of the Artur Bucar Santos Law – a project to expand the newborn screening for genetic diseases in Brazil. Project # PL7374/2014 has been presented to the Brazilian House of Representatives by the Brazilian Congressman Gonzaga Patriota.
Book Trailer – to promote awareness for a great cause of expanding the newborn screening worldwide, Vinicius wrote the script for the Sweet Odyssey book trailer. He also participates in the trailer, as an actor introducing and summarizing the video and engaging with his family endeavor to protect children lives.
Academically and extracurricular, Vinicius is a Crossroads LEAD Scholar, Member of International Club at Seton-La Salle, Member of Student Council at Seton-La Salle, Participant in Seton-La Salle’s Lawyer Mock Trial and Member of the Boy Scouts of America (currently preparing his Eagle Scout Project).
Our book is out for sale at Amazon and 50% of the proceeds from all sales benefits the Clinic for Special Children.
Before buying, take a look at some chapters and pages of the book Sweet Odyssey by Idario and Vinicius Santos.
"A meaningful lesson…" I invite you to travel on this amazing odyssey between two wonderful countries with different languages and habits.