My Story

My name is Jon and at 26 years old I feel it is finally time I tell you my story and my aspirations in life. I was born in Maine and grew up there for the majority of my life.

When I was three years old I was running around our old farm house. I was wearing a pair of flip flop shoes and came around the corner, tripping and falling onto the edge of our Maple roll top desk in the living room. The next day I had a bruise on my forehead and nothing more was thought of it until three days later when the bruise turned into a red line that ran down the center of my face from my scalp to just below the chin.

My parents knew this wasn't normal and scheduled what would be the first of my countless doctor appointments. No one could give a diagnosis and it took a year before I ended up at the Boston's Children Hospital. I can still remember how big and spiffy it all looked. My parents have always given me their unconditional love and support for which I am unspeakably grateful for, and they made the trip to Boston an adventure for me. I went into their conference room at the hospital and the doctors immediately diagnosed me with having Progressive Hemifacial Atrophy. They wanted to start operating immediately and said there would possibly be five to six more surgeries after that. My Father looked at me and said, "Jon do you want them to operate on you?" I said, "Nobody is going to cut on me for 19 years until I'm 21." The doctors started to laugh and my Father said, "Well he's a little off on the math but you heard him." One of the doctors in the room, who I will not name, asked in a condescending tone, "You are going to let a three year old make that kind of decision?" My Father replied, "It is his body and his decision, not yours." A silence filled the room and we left. Looking back I'm happy I never went there again and even more happy that I was allowed to make that decision. I remember feeling good, with the love and support of my parents. It was nice to finally have a diagnosis but what to do next?

My mother was getting some dental work done at Dr. Housely's office and she was telling him about me. She was having her mercury fillings taken out and he was geared up in a HVAC suit. After the procedure she asked him why he was wearing all of the protective gear and he told her that a year and a half ago the doctors had diagnosed him with advanced Melanoma. It had spread throughout his entire body and he they had told him he had less than six months to live. My Dentist like me, is a fighter - the kind of person that never gives up. He proceeded to tell Mom about his experience with the Gerson Diet and that he thought it might help me. I know people don't like hearing, "cured from cancer," but that conversation was in 1988 and he is still my dentist.

My parents took the leap and we went to Mexico. The Gerson Diet is an extremely strict diet designed to cleanse the body and rejuvenate the immune system. A quick fact, did you know that in the 1800's it only took three weeks for a human to completely decompose once they were dead. Now it takes over six months with all the preservatives and chemicals in our bodies. The diet jump started my immune system and the degeneration of the right side of my face stopped after six months.

I was just finishing up with the diet when elementary school started. It was a small school, there were only 20 kids in my kindergarten class to the seventh grade and I'm still in touch with many of them. That fall I got a severe case of Bronchitis and Pneumonia. I recovered quickly but about a month later became very dizzy during the day. The next morning before going to school I woke up to watch Mr. Wizard, one of my favorite shows as a kid. I turned on the television and just heard garbled and muffled sounds. I naively thought there was something wrong with the sound and turned the volume up to the max, but I had lost the majority of my hearing overnight. I was one of the first kids in Maine to get fitted with, "in the ear," hearing aids. Losing my hearing was a struggle for me but I am thankful that the school I attended was so small and that I had already learned how to speak when I became hard of hearing.

The following spring I started to go blind in my right eye. Every day for about two weeks my vision would get worse and worse. Mom took me to an optometrist and he had me wear a patch over the eye I could see out of, thinking it might help the vision come back. When that failed he recommended me to another specialist who was also befuddled by the problem. The only thing they could come up with was terminal Optic cancer. Thankfully an MRI ruled that out and the problem stayed a mystery.

The atrophy in my face was permanent and as I grew older my face took on the crescent moon look. As a child my dentist recommended that I see a good friend and colleague of his who was a maxillofacial surgeon, Dr. Collett, to keep track of my progress as I grew up. I had a lot of problems with my teeth. I had braces to straighten them out but they could only do so much and for a long time I could only touch one side of my jaw or the other. When I was 16 and my face had stopped growing, Dr. Collett performed a six hour jaw surgery to fix me up and correct my bite.

Jumping back a bit, when I was nine I was able to attend an art school for gifted and talented kids. I took a photography 101 class there and will never forget watching a black and white photograph magically appear in the developing tray under the red light in the darkroom. I was bit by the "Shutter Bug" and have been into photography ever since. When I was in high school I wrote a grant to get our long deprived darkroom back in order and taught photography classes. I attended college at the University of Maine in Orono and studied photojournalism there. Then I moved to Miami to shoot fashion, went to San Francisco to do cinematography, and have ended up in New Orleans as a struggling artist.

I've know about The Romberg's Connection for a while and the stories here have inspired me. It has come to me what I need to do in life. I've met a few famous photojournalists in my life and they all say the same thing. If you want to be someone in our world you need to write a book that documents a subject that means a lot to you. All along the subject has been right in front of me. Us. I want to raise awareness about people and their families who have been affected by Romberg's.

Feel free to leave a message for Jon at rombergs@hotmail.com