BALTIMORE (WJZ) — It was a dream come true for one Maryland girl fighting a rare disease.
Bel Air teen Macey Brietenback was born with visceral myopathy, which basically leaves her without a working gastro-intestinal system. That means she cannot digest food. When she was born, her parents were told she wouldn’t survive a week.
She recently defied the odds to compete in Miss Maryland Teen. Everything was perfect from head to toe as the 15-year-old prepared for the pageant last month, with WJZ’s Linh Bui by her side.
It was an emotional journey for a girl who usually can’t even leave her home.
“I’m usually in bed,” she says. “I don’t feel good enough to get up most days.”
Due to her disease, most of Macey’s stomach and large bowel have been removed.
“I’m always in pain,” she says. “It never goes fully away.”
Every day is a battle. She spends 18 hours a day hooked up to IVs, with nutrition fed through a line in her heart. She’s had eight exploratory surgeries.
“It’s been kind of rough, though, because I’ve been pretty sick lately and the doctors have told me ‘There’s nothing else we can do for you,'” she says.
Macey and her family face a big decision — whether she’ll get a rare, risky transplant.
“People discuss about their kids, prom and you know, and their grades,” says her mother, Mickey Brietenback. “We discuss, you know, like literal like life or death… that’s what we talk about at night.”
When asked where she gets her strength as a parent, Mickey says, “I feel like, wow, maybe this is, maybe God has a plan, maybe this is part of his plan that she’s doing this contest and she’s going to encourage people.”
The pageant has been a much-needed escape for the family.
“I haven’t really done anything too special in my life that’s really meaningful to me,” Macey says. “And this means a lot to me and my whole family. I, again, haven’t done anything to make my parents very, like, proud.”
“I’m always proud of her,” she says. “I mean, half the time I don’t even know if she’s going to be here, let alone walk across a stage.”
During the pageant, Macey was met with a touching surprise, stealing the spotlight.
“Macey Brietenback, you have proven you have the courage to make all your dreams come true,” the announcer said, presenting her with flowers and a spirit award.
Macey and her family will cherish these memories forever.
“We need moments like this, you know, because that’s what carry her,” Mickey says.
“No matter how you feel about yourself, you are beautiful,” Macey says. “And I just want to show everybody that.”