Proteus Syndrome is most recognized by an award-winning movie, “The Elephant Man,” based on an actual patient.
A toddler in Harlem, Georgia is battling Proteus. Trey Mills will have an amputation September 19th, because Proteus Syndrome has caused his left leg to grow much longer than his right, making it impossible for him to walk.
“I’ve seen him tired, I’ve seen him a little too excited sometimes, but I’ve never seen him cry, never seen him frown.”
David Truitt is talking about 2 1/2 year old Trey.
The tow-head toddler likes baseball, playing catch, hitting golf balls– and would love to be able to run like other kids.
His mother, Summer Crewsonberry, plays with Trey at the Evans Towne Center park.
“He gets where he needs to go by doing the army crawl. It hasn’t stopped him, he does what everybody else does… just a little differently.”
Summer knew something was wrong when Trey was 8 months old: his legs were different lengths.
“They sent us to a geneticist and confirmed he did have Proteus Syndrome.”
Only 200 people in the world have Proteus. It’s a very rare overgrowth condition that causes body parts to be disproportionate. Everything on Trey’s left side is growing too fast, including his internal organs.
Summer explains it affects his spleen, small intestine, and blood pressure.
“Everything the little boy could have for Proteus, he has.”
It’s been a long journey, documented here in one of four binders with notes from some 150 doctor visits. and there will be more: in September, doctors will amputate Trey’s left leg.
“It’s about 4 inches longer that the right- he has no mobility and a permanent knee contracture.”
It doesn’t bend, it won’t straighten… and it hurts.
“I’ve asked him, ‘Trey, does your leg hurt?’ and he says, ‘Yes, mom, my leg hurts.” And I’ll ask him, ‘Do you want to get a new leg?'”
Summer’s worst fear is that he won’t understand after.
“I’ve tried to explain it to him but he’s too young, he doesn’t understand. He understands he’s getting a new leg, but what does that mean to a 2-year old? He does have his favorite stuffed animal, Curious George! George will also get an amputation that day.”
Family friend David Truitt is Trey’s biggest fan. He’s know him since he was an infant.
“My heart goes out to the children that do need help and their families. I haven’t had anything like this close to my family. I wanna be there for him, help them in any way that I can.”
He’s doing that through a golf tournament, “Tee’d Fore Trey,” on September first.
Right now, he needs donors:
“Anybody who can help us out in any way, shape or form! Door prizes, donations, anything we we greatly appreciate it.”
While Trey works on his putting, Summer looks forward to milestones like playing with other kids… and starting school.
“That’s our whole family’s entire thing: we want him as normal as he can be, his own normal, we want him as happy as he can be. He wants to ride a bike very bad, but he really can’t right now because of how long that leg is- he doesn’t have the mobility in it. We’re really hoping that once he gets this prosthetic, we want to see him ride a bike!”
The Tee’d Fore Trey golf tournament is coming up Sunday, September 1, 2013 at Bartram Trail, with a 9:00am shotgun start. Get your teams together– $75 per person.
Call (803) 300-7254 to register or if you want to donate door prizes, volunteer to help out, whatever.
And you heard in the story about Proteus affecting everything on Trey’s left side– internal organs, too. He has to have abdominal x-rays about every 3 months to make sure everything’s okay.
To keep up with Trey’s progress, like the Facebook page Support Trey’s Proteus Syndrome.