Like most pre-teens, 11-year old Arion seems to grow like a weed despite his many disabilities. As he has grown, it has become more difficult for his parents and caregivers to move him and care for his needs. There is a step up from the entry door of his home, making it difficult for wheelchair entry, and his bathroom is not accessible. Arion was only 1.6 pounds when he was born prematurely. In addition to living with Cerebral Palsy, he has ROP, Retinopathy of prematurity, causing visual impairment. Another complication of his premature birth is Necrotizing Enterocolitis (NEC), a disease that affects the intestine of premature infants, sometimes called Short Bowel Syndrome.
Like many families with pre-teens, Arion's family is always "running around," but instead of sports and scouts, his days include frequent visits to a GI Doctor, a lung doctor, a psychiatrist, an eye doctor, speech therapy, OT, PT, and Hippo Therapy. He also goes to school four days a week and receives some homebound services. When returning home, from a busy day, they are challenged with safely getting Arion up the step and into their home. Things are complicated, even further, when it is time to transfer Arion to a bath. The chair doesn't fit through the bathroom door. Arion has grown to a size that makes transferring to their small tub dangerous for both him and his mom.
Arion loves music, and when someone sings to him, as well as cars and toys that make noise and music. A modified entry and an accessible bathroom will make for a safer home. It will reduce the risk of injury and eliminate physical stress on his parents and caregivers. With a better quality of life for the whole family there will be more time to sing and enjoy music with Arion.