Stephen is 7 years old, and was diagnosed with Cerebral Palsy at 10 months old. He was born 7 weeks premature and spent 8 days in the neonatal intensive care unit (NICU). At 2 years old, he spent 4 days in the hospital due to pneumonia. Since that time his health has been good, although he had one set of ear tubes surgically implanted at 3, and a second set implanted at 5, due to chronic ear infections and fluid.
In January 2013, he had surgery on his right eye to cosmetically correct his eye turning in (strabismus). At 7 years old, Stephen is pre-verbal, and able to walk with maximal assistance, using a gait trainer. He recently began sitting up on his own. He needs to be fed, dressed, and diapered.
Over the years, Stephen has had many hours of occupational (OT), speech, and physical therapy (PT), as well as stem cell and hyperbaric oxygen therapy (HBOT). We also had him evaluated at the Institute for the Achievement of Human Potential (IAHP). A center that works with brain-injured children. Although we had financial assistance with the stem cell therapy, all of the costs for the HBOT and IAHP were paid out of pocket. There have been thousands of dollars of out-of-pocket co-payments associated with his OT, PT and speech. Our current insurance plan is paid for completely out of pocket. It is a limited cost sharing plan with exclusions for pre-existing conditions.
This plan does not cover his current physical therapy, or any type of therapy related to Cerebral Palsy. For the past year, Stephen has been doing a new home based therapy called Applied Biomechanical Rehabilitation (ABR), based out of Canada. Myself and a paid babysitter have been spending 1-2 hours daily performing this therapy. We have seen great results, with his core being strengthened, resulting in his ability to sit up and take more productive steps. We just want to thank the Elks for their financial assistance with ABR as well as all their love and support.
Stephen also has been attending PG Chambers school in Cedar Knolls since July 2013. Stephen has a 9 year old typically developing sister named Gwyneth as well as myself and my husband in our family. He is a wonderful child, as well as a joy and an inspiration to be around. Although at times it has been difficult, as a family, we are committed to doing everything possible to help him walk, talk and reach his greatest potential.