A Very Special Patient
Victor Pauca is 11 years old. He lives in Winston-Salem with his mom and dad, his sisters, and the family dogs. Vic is very special to his family, and he's very special to us at Resilience, too.
Victor is Resilience Project's first patient who does not have cancer.
Instead, Vic lives with another kind of chronic illness - his is a rare genetic disorder called Pitt Hopkins Syndrome. PTHS is caused by a mutation or deletion of a specific gene in chromosome 18. It's characterized by developmental delay, hyperventilation or breath-holding, lack of verbal communication, epilepsy, and gastrointestinal issues.
Victor attends a school designed to help kids with chronic health impairments, and his family takes great care of him. His older sisters, Sofia and Francesca, especially enjoy helping him with things around the house. Vic loves being outside in nature, playing with tops, swinging, watching comedy, listening to music, and looking at books.
Victor's sock will benefit the Pitt Hopkins Research Foundation, which was co-founded by his parents Theresa and Paúl to raise money to find a cure. Vic was one of the first cases of PTHS diagnosed in North Carolina; it is still unknown how prevalent the disorder is. The genetic link was identified in 2007 and research is still being done to look for a cure.
If you're interested in designing Vic's sock, check out the contest page.