Meet Camden!

Camden is an 18 year old fun loving and energetic teenager who celebrates Christmas all year round and the magic, hope, and joy that comes with the season. He enjoys time with his family, Florida State football, touching trucks, listening to contemporary Christian music, and is somehow the President of his school's Good Choice Club.

Camden was born full term with no complications but his family began to have concerns around 9 months old when he still had very poor balance and was unable to sit up. An MRI at 12 months confirmed damage to his cerebellum and a diagnosis of spastic quad Cerebral Palsy soon followed.

Camden spent his early childhood attending multiple therapy sessions with additional diagnoses of failure to thrive and eventually dysphagia. A G-tube was added at age 3 and his parents were stumped by the continual regression not normally associated with CP. Genetic testing was recommended but no matches were found. A wheelchair soon followed and then more therapies and uncertainty.

Fast forward to 2020 after encouragement from a wonderful specialist, genetic testing was once again attempted and this time a match, H-ABC. Relief followed that they finally had an answer but more uncertainty arose due to the rare nature of the disorder and lack of clinical treatment and answers.

Camden has remained brave and courageous through numerous hip and spinal surgeries and loves life as much today as he ever has, despite his ever growing challenges and obstacles. In fact, he had to undergo a redo of the spinal surgery and is doing well!

Camden may be non verbal but he communicates nothing but joy and happiness through his smile and personality. The future may be unknown but he and his family are surrounded by a wonderful group of families, friends, and specialists who will not give up until a treatment is found.