Ben's Story

Ben was born in December of 2007, he is an adorable little boy and a very special part of many peoples’ lives, especially his family. He has had a tough start in life and will face many more challenges in the future.  He does not have a specific diagnosis but rather a collection of conditions. The most significant ones are infantile spasms (a rare and catastrophic form of epilepsy) that have halted his development, severe cerebral palsy (his muscles are hypotonic) preventing him from holding up his head or sitting by himself. He also has a cortical visual impairment, meaning the messages passed from his eyes to his brain are not connecting properly.

Ben has undergone numerous genetic and metabolic tests in the hopes of diagnosing his unique condition; however, nothing has come back positive. Once we exhausted the Miami Children’s Hospital Department of Genetics, we were referred to a specialist at the University of Chicago. While being put on an 11 month wait list for an appointment we contacted Bella’s Angels for assistance in making this trip a possibility for our family. Due to the ongoing financial stresses of caring for and traveling with a special needs child Bella’s Angels was able to assist us with air, car and accommodations that fit our needs.

Seeing this world renowned physician gave us hope for some answers as to why this happened to Ben, could it happen again if we were to have another child and what could we expect for Ben’s future? Unfortunately we have no concrete answers to those questions yet but Ben is currently participating in a genetic study in which to find these answers. It is our hope that Ben can help to make a discovery and help future generations of children.

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