Cvimom.wordpress.com is where I share my 16-month-old daughter Aly’s journey. When Aly was born she had severe nystagmus (uncontrollable eye movement). We were told by her pediatric opthomologist that she was totally blind with no light perception. He said her vision loss was neurological. She was diagnosed with Cortical Blindness/Cortical Visual Impairment (CVI) when she was five months old through an MRI. Her vision has continued to improve and she is now focusing and tracking. Aly was also diagnosed with global developmental delays, congenital muscle disorder, microcephaly and brain malformations. She is missing white matter and portions of her frontal, occipital and temporal lobes. She also has a thinned corpus collosum (the part of the brain that connects the right and left hemisphere). It became evident that Aly had hearing loss around the time she turned one. She now wears hearing aids and receives at-home hearing therapy. We are working on getting her into the Mississippi Deaf-Blind Project to serve as an additional therapy for her dual sensory impairment. Aly started therapy (PT, OT, ST) at seven months old and has continued to make progress developmentally. Early detection and intervention has been the key to her success.
My family (Aly’s brother Triston is 3) recently made the decision to move to Starkville, Miss., because of the resources that were available for Aly. She is currently attending a preschool program for children with disabilities at T.K. Martin Center for Technology and Disability and a pediatric therapy center which provides her with additional feeding therapy. Her occupational therapist at Kids Therapy Spot specializes in children with visual impairments and CVI. We are very fortunate to have a therapist who knows about CVI and light box therapy. Most families in Mississippi who have children with CVI do not receive adaquate vision services. There are very few therapists, Early Intervention coordinators, TVIs and medical professionals that know about CVI. These children lack proper assessment and the intervention strategies that will ensure they have a bright future. Aly’s journey has inspired me to become an advocate for ALL children with CVI by the creation of The Alyssa Greer CVI Foundation, a non-profit organization that will provide families with the resources, support and educaiton they so desperately need, as well as bring awareness and specialized training for professionals in our state.