Gavin is 15 yo and a high school freshman. He was diagnosed at age 1 with CHARGE syndrome. He was born with several features including truncus arteriosus, hearing impairment, oralmotor dysfunction, small size and, later, behavior challenges. He has had multiple surgeries and procedures in his 15 yrs and potentially has more ahead. Gavin is a funny and imaginative young man and hopes to some day work in the film or theater industry. He participates in the robotics club at his school and has done multiple plays with Drama. Although he has multiple medical challenges he continues to work hard to overcome.
CHARGE is a complicated syndrome that the medical field has limited knowledge of. It requires a large team of providers for management due to the involvement of multiple systems. Each person with CHARGE syndrome can be very different but many have some common characteristics and similarities. When supported well those with CHARGE syndrome can thrive.
