By Samantha Grillo @_samanthagrillo

DESPERATE Jeffrey Ortega wants his size 16 foot amputated after it swelled due to a genetic condition

Scroll down for the full story

Videographer / Director: Travis Mays
Producer: Samantha Grillo, Chloe Browne
Editor: Sonia Estal, Ian Phillips

Jeffrey Ortega posing in his custom Croc sneakers - the only pair of shoes he can fit on his feet
His severely swollen feet have left him wheelchair bound and unable to walk

Both of the 26-year-old’s feet are twice the normal size and he lives in constant pain. 

Jeffrey was born with Proteus Syndrome, a rare condition that causes bones, skin and tissue overgrowth, and affects just a handful of people worldwide.

His feet have swelled to a size 16 - making him unable to wear regular shoes

Proteus has affected Jeffrey’s hands, hips, and legs - and he believes amputation of his left foot will relieve his pain and stop the growth. 

Currently his left foot is 17 inches in circumference and 14 inches long while his right foot is 14.5 inches in circumference and 12 inches long.

Jeffrey Ortega has been suffering from Proteus Syndrome since childhood
He has had 11 unsuccessful surgeries on his legs and feet so far

Jeffrey, from Deerfield Beach, Florida, has been suffering from Proteus Syndrome since he was just a few months old.  

He said: “My mother noticed my swollen right index finger when I was only nine months old.

Jeffrey's feet require daily care and baths to keep them clean

“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.” 

Jeffrey stopped wearing regular shoes age 11 and wore only custom shoes, socks - or often went shoeless.

Jeffrey's mother, Alicia Ortega, has been caring for him since he was a child
The rare condition affects only a handful of people worldwide

He said: “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.” 

When he was a teenager Jeffrey was given special shoes that fit his overgrown feet.

Jeffrey's mother saw the first sign of symptoms at just 9-months - when she noticed his index finger was swollen

He said: “In 2005, the National Institute 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.

Jeffrey's mother helps him clean his feet
Jeffrey was bullied in school for his overgrown feet

“I can bathe myself with the Crocs on, and I can maneuver around the house better with them on. 

“I only have one pair though, and the soles are falling apart because I’ve been using them for the past four years.

“It’s very sad to me to go to a store and see my family find shoes easily. I have to ask the manager if they could help me find a pair.

Jeffrey believes amputation of his left foot will relieve him of his chronic pain

“They always tell me to try online stores - but I never have any luck there.” 

After 11 failed attempts to treat his feet with surgery, Jeffrey decided that amputation is the best option.  

He said: “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 a scared teenager but last year I brought it up to doctors again.

Jeffrey stopped wearing regular shoes age 11 and wore only custom shoes

“The foundation lost most of it’s funding but recommended another doctor who does amputation.”

Doctors agreed to perform the amputation if Jeffrey paid for the procedure in full.

Jeffrey said: “The operation costs about $40,000 - this includes the surgery, prosthetics, and follow up physical therapy to teach me to walk again. 

“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”

Donations for Jeffrey’s surgery can be made at