Sharing Family Stories – A.J.

Select a story below to read more about each individual.

Austin James (A.J.) came into our family as a foster child at 5 months of age. CYF told us that he was developmentally delayed. A.J. had trouble eating from a bottle and we found out that we needed to get a GT Tube for him at 8 months. He was beginning to gain weight and loved playing with his musical piano. He would play his music for hours. His favorite show was the Wiggles. He was learning to walk in his walker and was so happy he was moving around the house.

We adopted A.J. at 18 months old and I noticed after the adoption ceremony he wasn’t breathing right and we immediately drove to Children’s Hospital. Children’s called in all types of therapists and the Cleveland Clinic to figure out what was wrong with him. The pulmonologist talked to us about doing a muscle biopsy and putting a trach in to help him breath. A.J. was diagnosed at 22 months of age with Eye-Brain (Congenital) Muscular Dystrophy (5% of children are diagnosed with this disease). He is on a ventilator and uses cough assist machine for his secretions.

A.J. has had back surgery due to the curvature of his spine which was crushing his left lung. Every 6 months AJ goes in to have his trach, ears and his back extended. He has lived through many hard complications. A.J. will be going getting his spinal fused shortly to help his scoliosis.

A.J. is now 9 years old and a very happy boy and enjoying fourth grade at the School for the Blind.

A.J. has taught many doctors, nurses, and teachers on how to handle children with special needs. He has just helped his friends at Child’s Way by getting House Bill 1960 passed by extending the age to 21 so they may continue to have a place to make friends and memories. As long as A.J. is here on earth, he will continue to make great strides and help others with special needs.