Teen with rare disorder often confined to bed—enters beauty pageant hoping to inspire others along the way

November 29, 2017 3:54 pm Last Updated: November 29, 2017 8:28 pm

When Macey Brietenback was born, the doctors told her parents that she had a week to live. She has visceral myopathy, a rare disorder that greatly impedes her gastrointestinal system, resulting in her inability to digest food.

Sixteen years later and Macey is still here, although making it this far has been anything but easy.

She spends every day hooked up to IVs for 18 hours, getting nutrition fed to her through a line in her heart.

(CBS News/Screenshot)

Macey spends most of her days at home in Bel Air, Maryland.

“I’m usually in bed,” Macey told CBS Baltimore. “I don’t feel good enough to get up most days.”

The majority of Macey’s stomach and large bowel have been removed.

“I’m always in pain,” she continued. “It never goes fully away.”

Macey has had eight exploratory surgeries and many, many more smaller surgeries to try to fix her bowel. Soon she may have to get a rare and risky transplant. Although, she and her family need to decide whether or not it’s worth it.

“People discuss about their kids, prom, and their grades,” said her mother, Mickey Brietenback. “We discuss, like literal, life or death … that’s what we talk about at night.”

Macey often dreams of doing the everyday things other kids take for granted.

“I’d be happy even if I could just go to school,” Macey said. “That would be life-changing for me.”

But Macey doesn’t want to make people feel sorry for her. She had a plan to inspire.

(CBS News/Screenshot)

Earlier this year she set her heart on competing in this year’s Miss Maryland Teen beauty pageant.

“I’m trying to break out of the bubble,” she told CBS News.

After passing the initial interview and making it to the final, she had to raise sponsorship money. Through a GoFundMe page and with the support of local businesses who donated clothing, photography, hair, makeup, and jewelry, she made it to the three-day pageant in October.

The planning to get there and the pageant itself was a well-warranted escape for Macey and a chance for her to do something for herself.

(CBS News/Screenshot)

“I haven’t really done anything too special in my life that’s really meaningful to me,” Macey told CBS News. “And this means a lot to me and my whole family. I, again, haven’t done anything to make my parents very proud.”

Yet her mother dismisses Macey’s comment saying through tears, “I’m always proud of her. I mean, half the time I don’t even know if she’s going to be here, let alone walk across a stage.”

“I feel like, wow, maybe God has a plan,” Brietenback continued. “Maybe this is part of his plan that she’s doing this contest and she’s going to encourage people.”

Brietenback’s feelings were soon proven right. It took all of Macey’s energy to make it through the pageant, but it didn’t go unnoticed.

The judges surprised Macey with flowers and, more importantly, a spirit award.

(CBS Baltimore/Screenshot)

“Macey Brietenback, you have proven you have the courage to make all your dreams come true,” the announcer said, presenting her with the special award.

The Brietenback family is sure to cherish this moment forever.

“We need moments like this, you know, because that’s what carry her,” Brietenback said.

“No matter how you feel about yourself, you are beautiful,” Macey said. “And I just want to show everybody that.”