Vinicius Santos (Vini)
Brother of a boy born with Maple Syrup Urine Disease
Born in Fortaleza, Ceará, in northeastern Brazil, Vini was five years old when his family moved to the United States to save his brother’s life.
He is currently a senior at Seton La-Salle High School, Pittsburgh, Pennsylvania.
Vini is a Crossroads ‘Gold Honor Roll Scholar’ and received the Staff Award as an outstanding graduating senior. The Crossroads Foundation has a mission to provide promising youth, with limited options, access to a quality Catholic high school education by nurturing their academic and personal growth through financial assistance and college preparation.
Vini co-authored a family book called ‘Sweet Odyssey’. He also wrote and directed a video trailer for the book, which promotes the need for educating people about the importance of newborn screening: www.sweetodyssey.net
Vini also wrote the ‘Artur Bucar Santos Law’. This draft was presented by Federal Congressman Gonzaga Patriota to the Brazilian House of Representatives in 2014 titled PL 7674. This law calls for the expansion of the types
of newborn diseases screened in Brazil, that all tests would be standardized throughout the country and the government would appropriate funds to treat all persons suffering from detectable and treatable rare diseases.
Along with his father, Idario, and Congressman Gonzaga Patriota, in December 2015 Vini spoke at a public hearing about the “Artur Bucar Santos Law” in Petrolina, PE Brazil.
In October 2017, Vini became an Eagle Scout, the highest rank possible from the Boy Scouts of America.
He will graduate from Seton La-Salle in May 2018 and is planning to attend Case Western Reserve University, Cleveland, Ohio, in the fall.