Proteus Syndrome: Go Trey, GO!! - WJBF-TV ABC 6 Augusta-Aiken

3-year old fighting Proteus Syndrome

Proteus Syndrome: Go Trey, GO!!

Posted: Updated:
3-year-old Trey Mills is battling Proteus Syndrome, a very rare disease that causes rapid overgrowth. 3-year-old Trey Mills is battling Proteus Syndrome, a very rare disease that causes rapid overgrowth.
WJBF's Jennie Montgomery with 3-year-old Trey Mills, who lost a leg to Proteus Syndrome.who WJBF's Jennie Montgomery with 3-year-old Trey Mills, who lost a leg to Proteus Syndrome.who
WJBF's Jennie Montgomery, Summer Crewsonberry and her son Trey Mills, capture a selfie during an interview with News Channel 6 on July 9, 2014. WJBF's Jennie Montgomery, Summer Crewsonberry and her son Trey Mills, capture a selfie during an interview with News Channel 6 on July 9, 2014.
The 2nd Annual Tee'd Fore Trey golf tournament is September 7, 2014 at Bartram Trail Golf Course. The 2nd Annual Tee'd Fore Trey golf tournament is September 7, 2014 at Bartram Trail Golf Course.
3-year-old Trey Mills takes over for WJBF's Jennie Montgomery during an interview at his home. Trey has Proteus Syndrome. 3-year-old Trey Mills takes over for WJBF's Jennie Montgomery during an interview at his home. Trey has Proteus Syndrome.
Harlem, GA - Trey Mills has been a fighter since his first surgery in 2011--  when he was just 18 HOURS old.

He is one of only 200 people in the world with Proteus Syndrome, which causes rapid growth-- not only of the limbs. but of the organs.

Trey faces extraordinary challenges, but he's got a spirit that inspires everyone who meets him. And as you may guess from his new camo leg-- Trey loves "Duck Dynasty!"

More now, in this News Channel 6 Extra:
   
Trey Mills looks like any other 3-year old kid on a trampoline... ("Hey, la la do la do la, how ya doing, Mama?") ...but unlike others, he's bouncing into brand new adventures with a prosthetic leg.

"He took it like a grain of salt. When kids look at him and say 'What happened to your leg?' he says. 'I got a new one!'"

Before his surgery, Trey couldn't get around like this because his left leg was 4-inches longer than his right. On September 19, 2013 he had an amputation.

"I mean, it doesn't faze him at all, He knows it's his leg, he picked out the camo fabric and that's HIS leg, he's fine with it."

Proteus Syndrome makes the left side of Trey's body grow faster than the right.
"So if you notice when he walks he kind of leans, because the left side is growing longer and wider, his ribs on the left side are larger... it literally affects everything on his left side."  

You can see it here, too: his left hand is much bigger because of an overgrowth of tissue and bone. The ring finger has lost all feeling; it too, will have to be amputated later this year.

But there's so much more you can't see:  he has cysts growing in his kidneys, spleen and liver-- the liver has actually grown an extra lobe. He has high blood pressure and he can't eat much. In June, doctors had to put in a G-tube so he can get the calories and nutrients he needs through nightly feedings.

"That's hard, especially when you've got a little kid that wants to toss and turn and he's got a tube hooked up to his stomach- it's hard."

Summer focuses on the positive, like not having to make Trey swallow his medicines anymore... they go right into his port.

"Trey, STOP! If you pull one more out you're gonna get in trouble. Thank you. Why don't you wipe the table off."

Jennie: "Is it hard for you to punish him? I mean, do you ever feel sorry for him, because of his challenges, and cut him a break?"

"Uh hmm, no, the only time I'll ever really cut him a break is if he's too exhausted. But, discipline-wise, he knows he's as normal as everybody else so he's gonna get treated as a normal 3-year old would get treated- cause when he goes to school the teachers aren't gonna treat him differently, he's gonna have to do the same thing that all the other kids are doing."

And even though he won't start Pre-K officially until August of 2015, he goes half-days now, so he can begin to build up the endurance he'll need to keep up with the others.  

"When the kids are coming down the hall, he's always the last one. So by the time he actually turns 4, and goes to Pre-K all day, he'll be just as fast as the others... he'll be able to go to the restroom by himself and do all that by himself since he's learned the prosthetic."

In April, the Make-A-Wish Foundation sent Trey and his family to West Monroe, Louisiana to meet the whole Duck Dynasty crew.

"He met all of them! He asked Si if he could drink some of his iced tea! They all loved him- especially because he leg was camo... so that just made it even better."

And Trey gave patriarch Phil a moment he won't soon forget:
"He said, 'Mr. Phil?' Phil leaned down and got to his level and said, 'Yeah, Buddy?' And Trey said, 'Look at my leg!' He threw his leg up in the air and Phil's like, 'Oh, well that's a nice leg!!'"

And for a brief time, mother and son forgot about the daily struggles of living with a disease that science can't stop; Summer met other Make-A-Wish parents who can relate to her daily demands and responsibilities, in a way that most of us can't.
 
"What prepares you for it? Nothing. We're gonna get through it today and we'll approach something else tomorrow. You just have to do the best you can today, cause it's not gonna change him and his little personality. I know God picked him for a reason and people that get to know him can definitely see that."

You can help support Trey's fight against Proteus Syndrome by taking part in the 2nd annual "Tee'd Fore Trey" golf tournament on September 7th at Bartram Trail Golf Course. It's $75 per player, four players to a team, with a shotgun start at 9-am.  

You could win a car: Taylor Hyundai of Augusta will be sponsoring a Hole-in-One Car Giveaway! Prizes also will be awarded for longest drive, closest to the pin, and more.

For more information, or to register for the "Tee'd Fore Trey" tournament, email teedforetrey@gmail.com or text David Truitt at (803) 300-7254.

     **From the archives: click here to watch our story with Trey Mills from 8/16/13, prior to his amputation.**





Powered by WorldNow

1336 Augusta West Parkway
Augusta, GA 30909

Telephone: 706.722.6664
Email: talkback6@wjbf.com

Can't find something?
Powered by WorldNow
All content © Copyright 2000 - 2014 Media General Communications Holdings, LLC. A Media General Company.