Joseph Williams, 41, of Chicago, was born with an extremely rare condition called an auto facial syndrome, which left him without a jaw. He says people have turned away from him out of fear, but he has not let his condition hinder him from anything in life.
After meeting his wife, Vania, 39, in 2019, Joseph is happily married and enjoys traveling and socializing.
Joseph, who does not know the cause of the syndrome, communicates through sign language, gestures, note-taking, and telephone. He eats by injecting mixed food through a tube into the stomach.
Joseph said: “Giving birth without a jaw was a shock to my mother. When I was only a few days old, I was taken from Illinois, where I was born, to Chicago, for multiple surgeries.
I did a bone and skin transplant while they tried to build me a jaw, but as I grew, my body rejected it and it did not succeed.
I was also sent for adoption, which led me to meet my adopted family.
“Growing up was difficult and being born that way caused me a lot of problems, but I tried not to let this fact affect me. I can not eat, speak or even breathe properly. I have a tube in my stomach in which I can put mixed food, but that means I have never tasted food.
The orofacial syndrome is a rare congenital deformity in which a person is born without a jaw and a beard. In almost all cases, the child does not survive because he is unable to breathe and eat properly.
Even with reconstructive surgery, the tongue is extremely underdeveloped, often making it impossible to breathe and swallow without assistance.
The first challenge for survival is assisted respiration and tube feeding. This is a lifelong affair, generally requiring the patient to spend almost all of their time under direct hospital care.