Md. Girl With Rare, Incurable Disease Leaving 'Bubble' To Compete In Miss Teen Maryland

BALTIMORE (WJZ) -- Fifty Maryland girls will soon compete for the title of "Miss Teen Maryland."

One 15-year-old finalist is Macey Brietenback, who was born with an extremely rare disease that basically leaves her without a working gastro-intestinal system.

She lives most of her life at home, in bed, but she's ready to venture out to try to become "Miss Teen Maryland."

When she was born, Macey's parents were told she wouldn't live a week. Her incurable visceral myopathy means she cannot digest food. At all.

"She's had eight exploratory surgeries, she's had O.R. 50 plus times," says her mother, Mickey Brietenback. "She's had her gall bladder out, her stomach out, her large bowel out."

She experiences chronic pain, she spends 18 hours a day hooked up to IVs and she has to have nutrition fed through a portal in her heart. She lives in a kind of bubble.

"I'd happy even if I could just go to school," Macey says. "That would be life-changing for me."

But Macey doesn't want to make you sad. She wants to inspire you. That's why she's competing for Miss Teen Maryland.

"I'm trying to break out of the bubble," she says. "I think the interview, I'm probably most nervous about, and walking in heels. That'll be very difficult, never really tried that one."

Her parents, both retired Baltimore City Police officers, are behind her all the way.

"Now it's just a matter of getting her there," Mickey says. "I don't care what we have to do, we're going to get her there."

Macey's platform at the competition is very personal: organ donation.

She wants a rare, risky transplant of almost her entire digestive system. Her parents are extremely anxious about the risks, so everyone is focusing on Macey and what she will bring to the competition.

"I want her to see the inspiration [she inspires]," Mickey says. "I want her to hear it from people."

If you'd like to know more about Macey, her story and her big plans, visit her website: PrayForMacey.com.

The Miss Teen Maryland competition is the weekend of October 27th.

Follow @CBSBaltimore on Twitter and like WJZ-TV | CBS Baltimore on Facebook