The extreme condition has affected the tissues in his hands, hips, legs and feet, causing them to grow abnormally and in a heart-rending video, Ortega is seen begging doctors: 'Please amputate my 17 inch foot.'
Ortega wants his left foot, which is a huge size 16, removed, because he lives in constant agony, believing amputation of the foot will relieve his pain and stop the growth.
Ortega has been suffering from the syndrome since he was just a few months old and was bullied so much in school he had to drop out at the age of 11.
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"My mother noticed my swollen right index finger when I was only nine months old. She thought it was a mosquito bite and tried homemade remedies but it didn't work.
Then, when I was one, my father noticed my left leg was a little longer than my right. I was bullied a lot in school, kids would spit on me and said I wore my dad's shoes. I also fell a lot and was eventually pulled out of school because the principal didn't want to take any chances with me - it was nerve-racking for my family.
In 2005, the National Institutes of Health gave me a pair of Croc shoes, which they thought were the best fit for me. They agreed to treat me and perform surgery on me - if I allowed them to use me for research about Proteus Syndrome.
I can bathe myself with the Crocs on, and I can manoeuvre around the house better with them on. Having the amputation would improve my life so much. It would help me walk again and I won't have to use a wheelchair anymore.
Five years ago, we asked doctors if amputation would be possible. I was ready for the surgery, but then met someone else who had their foot amputated, and it scared me seeing them walking on their knees. I was scared then - but last year I brought it up with doctors again."
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What is Proteus Syndrome?
Proteus syndrome, thought to affect only a few hundred people worldwide, results in bone overgrowth. The word 'Proteus' comes from the name of the ancient Greek god of change.
Overgrowth becomes apparent between the ages of 6 and 18 months and gets more severe with age. In people with Proteus syndrome, the pattern of overgrowth varies greatly but can affect almost any part of the body.
Watch the video here.
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