‘LITTLE MIRACLE’: SIX-YEAR-OLD BOY DEFIES EXPECTATIONS, LIVES THREE YEARS BEYOND EXPECTATIONS AFTER A RARE ‘ELEPHANT MAN DISEASE’ COST HIM HIS LEG

A LITTLE boy who lost his leg because of the rare condition known as “Elephant Man” syndrome has amazed doctors who first evaluated him three years ago.

Trey Mills, from Georgia, US, lives with Proteus syndrome, a rare condition that causes his organs, bones, skin, tissue and blood vessels to grow much larger than expected at a rapid rate.

The six-year-old is one of only around 200 people in the world living with the condition, often referred to as “Elephant Man syndrome.”

Trey’s left side is the most affected, with his leg growing four inches longer and his foot increasing by four shoe sizes.

But the pain from having to drag his left foot became so overwhelming that doctors removed his leg below the knee.

A year later, specialists also removed one of Trey’s ring fingers.

The youngster has undergone nine operations in the last four years, and three years ago doctors also identified a serious lung condition.

But despite being told his outlook was extremely uncertain, Trey continues to surprise everyone at every hospital visit, always wearing a bright smile.

Mum Summer Widener said her son was only a few months old when she realized something wasn’t right.

At 15 months old, doctors confirmed he had Proteus syndrome after Summer researched her son’s unusual symptoms.

“I realised one leg was longer than the other, and one hand was slightly larger,” she said.

“By the time he was one, his left leg was getting in the way of him being able to walk because it had grown so much.

“He had other issues like high blood pressure, skin differences and other complications too.”

Trey was three years old when doctors removed his left leg.

It had become so enlarged that he could no longer move it, and it remained fixed at a 90-degree angle.

His mum said: “Ever since he started to walk he would have to drag his longer leg with him. He used it as support.

“Despite the surgeries, the left side of his body continues to grow, as well as his ribs and back, which are developing into a significant curve.”

Yet Trey was soon faced with another major health challenge when doctors diagnosed him with a serious lung condition caused by tissue growth reducing the space around his lungs.

His mum added: “Every time he gets pneumonia or a respiratory illness, it becomes a major concern, but he is a fighter and has recovered every single time so far.”

Two years ago, Summer was told Trey might not recover from his first case of pneumonia, but he has overcome the illness four times since.

Every time Trey visits his doctors, she said they believe he will make it through another six months, yet he continues to exceed expectations.

“By all accounts he shouldn’t be here now,” she said.

“Trey is a little miracle, not only because his condition is extremely rare but also because he’s amazing.

“He is a brave, happy-go-lucky kid. He has been through so many surgeries and procedures, yet faces them with a huge smile.

“While he needs oxygen often and breathing treatments, that doesn’t stop him from enjoying life.”

Despite the many challenges that cause him regular pain, his mum says he remains happy and just like most children his age.

Summer said: “He’s a very, very smart boy and has accepted that he is different. He’s OK with that and enjoys 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, the overgrowth, and because he doesn’t enjoy wearing his prosthetic leg.”

Summer said she regularly notices curious looks from strangers, but often uses the film The Elephant Man as a way to help people understand her son’s condition.

The syndrome was named after Proteus, the Greek god of change, and refers to the way it changes the shape of bones and the body’s structure.

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 looking at him affects me much more than it affects him. If children ask what happened, he comes up with a different story every time.

“Sometimes he says he lost his leg in a shark attack, but other times he says, ‘Your hair color is different from mine, and my leg is different from yours.’”

Source:  The Sun

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