News 12 at 6 o'clock; Monday, May 26, 2014
AUGUSTA, GA (WRDW) -- Summer Crewsonberry had a normal pregnancy, and when she went into labor at 37 weeks, she expected to give birth to a normal baby. Instead, her son Trey has a rare syndrome. He's one of only 200 known cases of Proteus in the world, and he is Summer's entire world.
He continues to be her inspiration and she's sharing his story to inspire you too.
You can read part of our interview with Summer below, and remember to watch News 12 Sunday, June 1st. We'll be broadcasting live from the lobby of the Children's Hospital of Georgia for the CMN Celebration. Your donation during this telethon can help countless kids like Trey.
"It was never caught in ultrasounds during my pregnancy, but his umbilical chord had blood vessels in it, and it had intestines in it so thick he was losing oxygen. That's also another sign of his syndrome, but nobody knew because it's so rare. The next day at 18 hours, he had his first surgery. Everything was pretty normal until about 5 months old. I could tell one leg was kind of dangling, and his ring finger was a little big. As he grew older, his skin started getting really rough and wrinkly. And extremely thick."
"We went and saw a geneticist. He came up with a diagnosis of Proteus. Proteus Syndrome is a rare overgrowth of tissue, bone, vascular, organs. It actually affects Trey on his entire left side. They actually gave him a life expectancy of 31, but they also told us he'd never walk."
"He has a lot of tissue on his left side which makes it heavier. We put lifts on the bottom of his shoe. We tried everything. Gave him braces. He just couldn't walk because there was just too much pain and too much bone overgrowth. After 3 orthopedic knee surgeries to try to correct it, there was no correcting that we could do, so in August of last year, we had a leg amputation."
"He's been running, jumping, leaping. Everyday is a struggle for him because he gets exhausted. He's not used to walking. The past 6 months, or 4 months really, is the first time he's ever walked. He's getting a finger amputation this fall. He's having a little bit of kidney failure, but medicine is working to correct that."
"It's kind of tough, not knowing what's going to happen tomorrow, but we take it day by day. We have a great team here that's always looking to make sure that they catch it in time."
"You never know. I mean, I worked here for two-and-a-half years before I had him, and I never expected I'd be on this side of the hospital. He was given to me because God knew I could take care of him. God knew I'd be able to handle it. I do have my weak moments where I want to get upset and cry my eyeballs out, but then I remember, I don't let him see me cry because when he sees Momma cry, he knows he can get upset too."
"I always tell myself, faith for today, hope for tomorrow. Take care of today, and we'll go there tomorrow."
"If you've ever met this little boy, you can see the ambition he has. He's definitely been the biggest blessing. Ever."
"He's opened my eyes to the things I used to take for granted. There are only 200 known cases in the world, and there are no children living with it right now. That has been my ultimate goal is to educate, so that way the next baby that's born here with it, they'll catch it."
If you want to read updates about Trey, like his facebook page called "Support Trey's Proteus Syndrome."