As a toddler, Caleb had countless ear infections and appeared to be stiff. As he grew, his neck mobility became more noticeable and he didn’t have full range of motion. He had trouble hearing at school and complained of random pains which we attributed to growing pains. Full body x-rays showed fusion of multiple vertebrae and extra bones throughout his body. As the pain and bones increased and after many years of research and countless doctor visits, a terrifying disease found on the internet led us to the University of Pennsylvania where Caleb was finally diagnosed at age 10 with Fibrodysplasia Ossificans Progressiva (FOP).
FOP causes soft tissues, ligaments, and muscles to turn into bone eventually stealing mobility from the patient as their body is imprisoned in bone. FOP is an ultra-rare disease affecting 1 in 2 million. There are an estimated 800-1,100 diagnosed cases of FOP in the world. There is no treatment or cure for FOP at this time. However; there are four FOP drugs advancing through clinical trials. Hope is alive in the FOP community!
Today, Caleb is an energetic, caring 13 year old and although he does have many extra bones throughout his body, he still has his mobility. He experiences flare-up's frequently causing him pain and stiffness in multiple parts of his body most days. We are hopeful that the limitations caused by this disease will remain mild for Caleb until a cure or treatment can be found. We are happy to announce that Caleb has been accepted into a clinical drug trial so we are very hopeful! For now, he is able to continue to play the sports he loves, (with some limitations) with his whole heart and for that we are truly thankful. As with everything, he has faced this challenge tough as nails, with a unique outlook, no fear and a happy heart. He is truly a special soul and we feel blessed to have been chosen to raise him.
Thank you for helping us find a cure for Caleb!