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.