Gino is a 4 year-old from Nutley, New Jersey. Gino has been diagnosed with SATB2-associated syndrome.. This is due to a mutation in his SATB2 gene and a microdeletion on Chromosome 3. This condition is extremely rare, with only about 550 reported cases worldwide. SATB2-associated syndrome can affect multiple bodily systems and is characterized by cranio-facial abnormalities, hypotonia, severe speech problems, dental abnormalities, behavioral problems, significant developmental delays, difficulty eating, poor growth, risk for seizures, visual complications and cardiac complications. At only 4 years old Gino has undergone an extensive series of surgeries, procedures, and testing. Including four surgeries to correct his cleft palate, jaw, and bilateral ear tube placement. Along with CAT scans of his head and jaw, ultrasound of his spine, MRIs, multiple EEGs, EKGs, sleep studies, endoscopies, and hearing screenings. Gino has a history of utilizing a variety of specialized equipment including adaptive feeding and drinking equipment, orthotics, and specialized monitoring equipment for his oxygen levels and heart rate. He receives support from 7 specialists who continue to monitor him closely. Speech is currently Gino’s biggest challenge, but he is learning to communicate through sign language, gestures, picture supports, word approximations, and is currently being evaluated for an AAC device to help him better express his wants and needs. Gino is incredibly social and loves being around other children. He understands more than he can verbally express and thrives on connection and friendship.

Gino is surrounded by the constant love and support of his family. His mom shares that his diagnosis, while challenging, has ultimately brought them closer together as a family, strengthening their bond and teaching them to work as a team each and every day. Gino especially looks up to his two older siblings, who encourage him, play alongside him, and help guide him as he grows. The Charles Seller Foundation is grateful for the opportunity to work closely with Gino and his family this year. We would like to extend a warm welcome to them as they join the Charles Seller Foundation family!