Bel Air girl with rare disease prepares for Miss Maryland Teen USA pageant

Macey Brietenback came out wearing a long, light-colored lacy dress and jogged over to a full-length mirror, with her sister, Lilly, holding up the back of the dress.

“Oh, I love this dress!” she exclaimed.

“I love the color, I love the belt — I don’t know, it’s so flowy and pretty,” Macey added.

Her mother, Mickey, asked if she felt like a princess.

“I feel like a princess, yes I do,” Macey said.

Macey, who lives in Bel Air and whose 16th birthday is Monday, tried on about six formal dresses on a recent Sunday afternoon at the Port Deposit home of family friend Amanda Vaughn.

Macey is preparing to compete in the Miss Maryland Teen USA Pageant Oct. 27-29 at the Bethesda North Marriott Hotel & Conference Center in Montgomery County.

Vaughn, owner of La Bellezza Boutique in downtown Bel Air, is helping Macey get ready.

The teen was born with a rare disease — visceral myopathy with underlying pseudo obstruction. The potentially fatal illness has affected Macey’s gastrointestinal system, leaving her in regular pain and at risk for infection, according to her mother.

Macey hardly ever gets dressed up and said she had never worn high-heel shoes until she tried on a pair of Vaughn’s at the fitting.

“Helping others gives you some kind of peace and grace,” said Vaughn, whose 19-year-old son also struggles with chronic illnesses.

Dawn Savick, Vaughn’s assistant, friend and neighbor, helped Macey and her family during the fitting. Colorful dresses hung in an upstairs bedroom; the garments were donated by Savick’s friend’s daughter.

Macey decided on a silver dress with a glittering top. She also needs shoes, a cocktail dress and professional wear for the interview segment.

“I’ve never worn a dress this fancy and this princess-y,” Macey said as she sat in the silver gown. “It makes me feel like Cinderella, and I love it.”

“This is like her birthday present,” her mother said. “This contest is the biggest present she’ll ever get.”

Vaughn learned about Macey’s need for pageant attire through a friend. She saw a post Macey had written on Facebook about her dream of being in a pageant, and she decided to help.

Vaughn, 40, competed in Miss Maryland Teen USA in the mid-1990s and was a fourth runner-up.

“[Macey] can represent beauty in such a pure sense,” Vaughn said. “I just felt like she could be perfect, and I just want wanted to help in any way I could.”

Local businesses have donated head shot photography, hair and makeup and jewelry. Vaughn’s husband, Ben, has donated website building services through his company, AutoWeb Technologies Inc. of Wilmington, Del.

A website has been set up to tell Macey’s story and help raise funds for her pageant appearance.

Purple bracelets are on sale for $5 each. They can be purchased at La Bellezza, Faye Daniel Designs and Sunny Day Cafe, all on South Main Street in Bel Air.

“I still won’t believe it, until she walks across the stage,” Mickey Brietenback said. “Every day is like, oh my God, can we make it?”

In and out of hospitals

The disease has affected Macey’s gastrointestinal tract, to the point where she must be fed intravenously through her her heart, according to her mother.

“That comes with its own set of problems, because it really stresses out the liver,” Mickey Brietenback, 49, said.

Macey has spent much of her life in and out of hospitals. She has been through more than 70 surgeries.

“I’m always at some level of pain,” said Macey, who noted it is usually around a five on a scale of one to 10.

The pain level does go higher, though, and she has to take pain medication or go to the hospital.

“Most of my days are [just] me laying in bed and dealing with my pain and just trying not to think about it,” Macey said.

The disease was discovered while Mickey Brietenback was pregnant with Macey. She said her three other children do not have the illness.

When she does go to school, Macey attends New Covenant Christian School, which has campuses in Abingdon and Bel Air.

Macey said she has a lot of support from friends and family, especially her sister, Lilly, 13. She got her learner’s permit in August, and she drives with her father, Tim, when she feels well.

She also goes out with friends or plays with her niece and nephew, the children of her 29-year-old brother, Tim Jr. Macey also has an older sister, Emily, age 22.

“I never get to do anything special in my life, except for this, and I am really excited,” she said of the pageant.

Macey has been to The Johns Hopkins Hospital in Baltimore so often that she knows many members of the medical staff. She said she is a member of a board made up of other teen patients who advise Hopkins officials on how to improve the patient experience.

She has not met anyone else who has the exact same disease, but she has met children living with other illnesses such as cancer and sickle-cell anemia.

She said compliments from other young patients help keep her going, as well as her Christian faith.

“If I didn’t have [faith], I probably wouldn’t be here right now,” Macey said. “I would have given up, and you can never, ever give up.”

“You have a lot to show people, Macey,” Vaughn said. “I’m excited for the world to meet you.”

Transplant debate

Macey’s pageant platform is pediatric organ donation, and she is supporting the nonprofit Donate Life Maryland. The organization registers eye, organ and tissue donors, according to its website.

Macey and her mother have debated whether she should be put on a waiting list for a transplant for a full digestive system — stomach, intestines, liver and pancreas.

Doctors have told the family that more surgeries on Macey’s small intestine “would do more harm than good,” but the transplants come with their own risks, and “the data of survival only supports five years,” according to the website.

Macey wants to get on the waiting list, but her mother said she is concerned about the risks.

“I’m trying to get her to 18, to make her own decision,” Mickey Brietenback said.

She broke into tears as she talked about her family’s preparations for Macey’s passing, rather than preparations for a teenage girl’s typical milestones such as dating and driving.

“We don’t talk about schoolwork,” Brietenback said. “We talk about her death.”

She and her husband are former Baltimore City Police officers. Mickey Brietenback is studying nursing at Harford Community College, and her husband owns Carpet Cops Inc,, a Bel Air carpet installing company.

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