Jeffrey Ortega's plea over growths due to Proteus syndrome that leave him immobile

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WARNING: GRAPHIC CONTENT
Jeffrey Ortega has Proteus syndrome, causing tissue to grow abnormally
It affects his hands, hips, legs and feet, which are twice the normal size
Extremely rare condition makes walking difficult and he has a wheelchair
Wants to have his foot amputated to stop it growing and relieve the pain

Published: 06:46 EST, 15 October 2015 | Updated: 12:50 EST, 15 October 2015

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A 26-year-old man whose feet are twice the average size due to a rare medical condition has begged doctors for an amputation.

Jeffrey Ortega wants his left foot - which is a huge size 16 - removed, because he lives in constant agony.

He was born with Proteus syndrome, a condition triggered that causes bone, skin and tissue overgrowth, and affects just a handful of people worldwide.

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

The condition also affects Mr Ortega's hands, hips and legs and he has to use a wheelchair as walking is painful and difficult.

He believes amputation of his left foot will relieve his pain and stop the growth.

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Jeffrey Ortega, 26, is begging for his left foot to be amputated as a rare condition means it is a huge size 16

Mr Ortega was born with Proteus syndrome, a condition triggered that causes bone, skin and tissue overgrowth, and affects just a handful of people worldwide

Mr Ortega, from Deerfield Beach, Florida, has been suffering from Proteus syndrome since he was just a few months old.

The condition is caused by a mutation in the AKT1 gene, which regulates cell growth, division and death.

The mutation causes some of the body's cells to grow and divide abnormally.

He said: '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.'

Growths began to develop, first underneath the soles of his foot, before spreading to the sides.

Mr Ortega stopped wearing regular shoes aged 11 and wore only custom shoes, socks - or often went shoeless.

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 Mr Ortega was given special shoes that fit his overgrown feet.

Mr Ortega is desperate for his foot to be amputated which he says will stop the growth and relieve his pain

Mr Ortega was bullied at school and eventually dropped out. He stopped wearing normal shoes aged 11

He said: '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

Jeffrey Ortega, 26

'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 to elp me find a pair.

'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, Mr Ortega has 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 scared then - but last year I brought it up with doctors again.

After 11 failed attempts to treat his feet with surgery, Mr Ortega has decided that amputation is the best option. He is pictured as his mother, Alicia, washes his feet

'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,' Mr Ortega said. He is pictured having his feet washed

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

He said: 'The operation costs about $40,000 [£25,811] - 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 any more.'

Donations for Mr Ortega's surgery can be made at https://www.gofundme.com/Jeffrey2015

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.

Proteus syndrome, thought to affect only a few hundred people worldwide, results in bone overgrowth. Mr Ortega's hands, covered in abnormal growths, are pictured

This overgrowth is usually asymmetrical, so corresponding body parts are not affected in the same way.

Some people with Proteus syndrome have neurological abnormalities, including intellectual disability, seizures, and vision loss.

Proteus syndrome results from a mutation in the AKT1 gene.

This genetic change is not inherited from a parent; it arises randomly in one cell during the early stages of development before birth.

The AKT1 gene helps regulate cell growth and division and cell death.

A mutation in this gene disrupts a cell's ability to regulate its own growth, allowing it to grow and divide abnormally.

More men are affected than women, but it is not known why.

Source: National Institutes of Health