Stephen was born 7 weeks premature in 2006. He stayed 8 days in the Neonatal Intensive Care Unit (NICU) due to Respiratory Distress Syndrome and jaundice. Although all seemed well at first, by 7 months old Stephen was still not sitting either independently or with support. His right eye was crossing inward, and he was unable to make eye contact. At 8 months old, we consulted a pediatric ophthalmologist. She suspected that Stephen had some kind of neurological problem, and recommended an MRI as soon as possible.
Cerebral Palsy and Optic Nerve Atrophy
The MRI revealed that Stephen had indeed suffered brain damage. After a consultation with a neurologist, he was officially diagnosed with Cerebral Palsy. Cerebral Palsy is a loss or deficiency of motor control caused by permanent brain damage occurring either before, during or shortly after birth.
Stephen has also been diagnosed with optic nerve atrophy in his right eye and cortical visual impairment. Optic nerve atrophy is a permanent visual impairment caused by damage to the optic nerve. In cortical visual impairment, the brain has a problem interpreting and/or understanding what the eye is seeing. However, with the proper
therapy, there is hope that the vision that he does have in the healthy left eye will improve.
Stephen has been receiving services from the NJ Commission for the Blind and Visually Impaired since his diagnosis. He also currently receives 3 hours of physical therapy, 2 hours of occupational therapy and 2 hours of speech therapy through Early Intervention. He has made the most gains recently in the use of his hands.
He is now able to feed himself "finger foods" and bring a fork to his mouth to eat. Although he is unable to walk, he uses his gait trainer to practice getting around. While his speech is minimal, he definitely understands what is being said and what is going on around him. His big sister Gwyneth can always get a lot of smiles and laughs out of him. He loves music and is also a big Wiggles and Barney fan. We are so blessed to have him as a part of our family.
We realize that there are many challenges ahead for Stephen and our family. Therefore, we are so grateful that there is an organization like the Shannon Daley Memorial Fund, that is willing to help with the costly medical expenses that come with raising a special needs child, and so eager to offer their support and encouragement