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Proteus Syndrome: Jeffrey Ortega, Man With Size 16 Feet, Starts Campaign To Raise Money For Amputation

By Lindsay McCane
Published on: 14:45 PST, Oct 20, 2015

Proteus Syndrome is a rare congenital disorder that causes bone, skin, and tissue overgrowth. Organs and tissues affected by the disease can grow out of proportion to the rest of the body, and can gradually get more severe with age.

There are only approximately 200 cases of proteus syndrome worldwide, and Jeffrey Ortega, 26, of Deerfield Beach, Florida, just happens to be one of them. It is the same disease that Joseph Merrick, the so-called “Elephant Man,” suffered from.

According to News.com.au, Ortega was diagnosed with the genetic mutation when he was an infant, after his mother noticed his right index finger was swollen and took him to the doctor. After thorough testing, the doctors later made the shocking discovery that he did in fact have the disease.

“My mother noticed my swollen right index finger when I was only nine months old,” Ortega said. “She thought it was a mosquito bite and tried homemade remedies but it didn’t work. When I was one my father noticed that my left leg was a little longer than my right.”

Ortega has since had trouble with his legs, hips, hands and, most notably, his feet. His feet are abnormally large, so much so that he can only fit into a pair of size 16 Crocs. His left foot measures 17 inches in circumference and is 14 inches long. His right foot measures 14.5 inches in circumference and 12 inches long.

At age 11, Jeffrey had to stop wearing regular shoes, and could only wear shoes that were custom made for his feet. He admitted that he experienced bullying from the kids at school, and said they would make fun of him thinking that he was wearing his 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,” he added.

In 2005, Jeffrey was given a pair of custom Crocs by the National Institute of Health. He said they were the best fit for him, and were able to cover his severely swollen feet. However, he said he only has the one pair and the soles are starting to give out. His feet have gotten so large that he can barely walk and must use a wheelchair to get around.

“They agreed to treat me and perform surgery on me if I allowed them to use me for research about Proteus Syndrome,” Ortega explained. “I can bathe myself with the Crocs on, and I can manoeuvre around the house better with them on.”

So far, Jeffrey has undergone 11 surgeries in an attempt to treat his feet. With each one failing, Ortega came to the conclusion that amputation was the only way he would ever be relieved of the pain he has experienced much of his life.

“Five years ago, we asked doctors if amputation would be possible,” he said. “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.”

Jeffrey later got over his fear of amputation, and brought it up to the doctors again. Because the foundation had lost most of its funding, they recommended another doctor perform the procedure. The surgeons agreed to do the operation, but only if Ortega paid for it in full, which will cost him approximately $40,000. To help raise the funds, Ortega has set up a GoFundMe page.

“The operation costs about $40,000 — this includes the surgery, prosthetics, and follow up physical therapy to teach me to walk again,” Jeffrey said. “I started a GoFundMe page, but have not reached my goal yet. 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.”

So far, Jeffrey has raised $15,998 of his $42,000 goal over a 14-month time period.

“Day and night I pray to God that an angel touches your heart and helps me pay for the surgery for a better quality of life,” the fundraising page reads.

[Photo via Shutterstock]

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