An adorable amputee born with the ultra-rare elephant man condition is defying the odds to live against terminal ‘months to live’ prognosis for the past three years.
Trey Mills, from Harlem in Georgia, has Proteus syndrome, which causes his organs, bones, skin, tissue and blood vessels to grow larger than normal at an accelerated rate.
For Trey, six, his left-side is most affected with his leg growing four inches longer and foot four shoe sizes bigger than the other.
Pain from having to drag around a dramatically longer limb meant in 2013 surgeons amputated at the knee and a year later due to additional growth they removed his ring finger.
The overgrowth disorder that only affects 200 people worldwide – one in 38 million – was popularized in the 1980 film Elephant Man.
On top of this, the youngster’s mother Summer Widener was told three years ago her son only had three months to live due to a terminal lung disease – but he is battling on with a smile on his face.
Trey Mills (right with his mother Summer Widener) , from Harlem in Georgia, has Proteus syndrome, which causes his organs, bones, skin, tissue and blood vessels to grow larger than normal at an accelerated rate
A picture of Trey when he was younger. Due to Proteus syndrome, his leg had grown four inches and four shoe sizes bigger
Trey lays out on the operating table after getting his left leg amputated due to the disease
For Trey, his left-side is most affected with his leg growing four inches longer and foot four shoe sizes bigger than the other
Trey has had nine surgeries and more than 400 hospital appointments over the past four years due to his condition, along with a terminal diagnosis of lung disease three years ago.
Despite being given months to live at several appointments, the brave boy, now six, is defying the odds with a smile.
Summer Widener, his mum, said: ‘Proteus syndrome makes everything grow larger, from his bones to blood vessels, skin, tissue, organs and more.
‘At a few months old, I realised one leg was longer than the other and one hand was slightly fatter.
Trey in 2017 with breathing equipment to help with his terminal lung disease
‘By one-year-old his left leg was getting in the way of him being able to walk because it was so large.
‘He had other issues like high blood pressure, skin deformity and other things too.
‘At the age of three he had a leg amputation and a series of surgeries to try to fix his leg, previously it had got to the point where he couldn’t walk because of the pain.
‘He was diagnosed with lung and respiratory failure, the tissue in his lungs growing extra thick causing the space in there to become smaller and smaller.
‘Every time he gets pneumonia or a respiratory illness it could be it for him, but he is a fighter and has recovered every time so far.
‘Two years ago, we were told he would never make it through his first batch of pneumonia, he has gone through four battles with it since and is still here today.
‘Every time we go back to the doctors they give us another estimate of six months to live, but he defies it every time and is a blessing – by all accounts he shouldn’t be here now.
‘Trey is a little miracle not only because his condition is extremely rare but also because he is amazing.
‘He is a brave, happy go lucky kid, he has had so many surgeries and procedures that he’s battle through with a massive smile on his face.
‘While he needs oxygen a lot and breathing treatments that doesn’t stop him from doing anything.’
Trey wearing breathing equipment with his prosthetic leg strapped down to the
Trey’s left foot grew four sizes bigger than his right one which caused it to become deformed
Trey’s leg pictured before the amputation with marks on his left leg to indicate it is the one to be amputated. His knee can be seen severely swollen by the disease
Trey’s leg after the amputation back in 2013. The disease affects only 200 people worldwide
Trey was diagnosed with Proteus syndrome at 15-months-old, following his mum researching the unusual symptoms her son was contending with.
Over the years, he’s had nine surgeries ranging from repair his damaged abdomen to having amputations and trying to halt his growth plates.
Summer said: ‘Before the amputation, the knee of the left leg was so overgrown and large that it wouldn’t move, it was stuck at a 90-degree angle.
‘Even surgery to release the contracture didn’t work, it was four inches longer than his right and his foot three shoe sizes bigger.
‘Ever since he could start walking he would have to drag his longer leg with him, he would use it as a prop and drag it.
The youngster as a baby which shows his left leg bigger than his right
‘Despite the surgeries, the left-side of his body continues to grow, as well as his ribs and back which are growing into a massive curve.’
Aside from aesthetic differences caused by the syndrome, internally he has been diagnosed with a end-stage lung disease caused by the growth of tissue that shrinks the space around his lungs.
Alongside a heart murmur, cystic lesions and varicosities of the spleen, liver and kidney.
Despite the numerous problems that cause him regular pain his mum maintains he’s happy and like most children his age.
Summer said: ‘He’s a very, very smart boy and has accepted he is different, he’s ok with that and loves the attention he gets.
‘While he is your typical six-year-old and loves sports, unfortunately he can’t play because of his lung capacity and overgrowth, as well as not liking to wear his prosthetics.’
Summer says she regularly contends with stares from strangers, but often uses the film The Elephant Man as a way to help them understand the seriousness of the problems facing her son.
The syndrome was named after Proteus, the Greek god of change and refers to the way it alters the shape of bones and the body’s structure.
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
She added: ‘I use the comparison regularly, I usually say ‘Do you know Joseph Merrick, the elephant man?’, and explain that he has the same syndrome.
‘I tell them it makes him grow larger than everyone else and at a much faster pace both internally and externally without slowing down.
‘People staring affects me a lot more than him, if children ask him what happened he comes up with a different story each time.
‘Sometimes he will say he lost his leg in a shark attack but other times he will say well your hair colour is different to mine and my leg is different to yours.’