Víctor is a young man born with a rare genetic disorder called Sotos Syndrome. It is believed that 1 of 10,000 people in the world are affected by this disorder caused by mutations in the NSD1 gene and not inherited from any of the parents. People with this syndrome suffer from a number of conditions, such as gigantism, blindness, intellectual and motor disabilities, hearing loss, severe scoliosis, and cancer. 

In Puerto Rico, there are no aid programs to help young adults with disabilities. Instead, when they turn 18, they are at the mercy of whoever takes care of them. In Victor's case, is his mother, Wanda, a thyroid cancer survivor who tirelessly takes care of him, Víctor's father who recently became blind and her mother, who after Hurricane María is tied to a bed unable to walk. 

Víctor is considered to have the knowledge skills of a ten year-old-boy. He spends his days inside the house. He is only allowed to go outside if someone is with him. But, when you talk with him, his wiseness can impress you. He talks about how he sees the world and how is everything outside. He never learned how to ties his shoelaces, and yet he learned how to use Facebook like every other millennial of his age. 

From the outside with all these difficulties, the world of Víctor seems very limited and his future uncertain. But when you get to know him you will be surprised by his resilience. Inside his mind, limitations do not exist, and the world is filled with colors, music, and lots of love. 

This is an ongoing project aiming to explore how resilience can take form and can shape a young man’s identity construction. It also seeks to break the stigma and the discrimination surrounding people with disabilities and to raise awareness in Puerto Rico for inclusion for every aspect of their life no matter the age, race, and socio-economic background.   

Adriana Parrilla 2022 © All rights reserved.
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