Macey Brietenbeck American teenage girl with visceral myopathy Country: USA

Content:

1. Visceral Myopathy: A Rare and Debilitating Disease
2. A Teenage Dream: Competing for Miss Maryland
3. A Lifetime of Medical Struggles
4. A Transplant as a Last Resort
5. A Moment to Celebrate
6. "This pageant...is like a birthday for her," added Mickey.

Macy Britenbeck: Teenage Pageant Star with a Life-Threatening Condition

Visceral Myopathy: A Rare and Debilitating Disease

Macy Britenbeck, a 16-year-old American teenager, has been living with a rare and potentially life-threatening condition called visceral myopathy. This chronic intestinal pseudo-obstruction causes severe pain in Britenbeck's gastrointestinal tract, making it difficult for her to attend school regularly.

A Teenage Dream: Competing for Miss Maryland

Despite her medical challenges, Britenbeck is determined to experience a moment of normalcy. In late August, she competed in the Miss Maryland pageant in Rockville, Maryland, as Miss Cecil County. The event was a dream come true for Britenbeck, who has never been able to dress up or wear heels before.

A Lifetime of Medical Struggles

Britenbeck was diagnosed with visceral myopathy while her mother was still pregnant. Doctors initially predicted that she would not survive beyond a week. Her condition is particularly severe, although visceral myopathy is sometimes treatable with medication. To date, Britenbeck has undergone over 70 surgeries, but doctors have warned that any further surgical intervention would do more harm than good.

Currently, Britenbeck relies on intravenous (parenteral) nutrition, bypassing her gastrointestinal tract. Her mother, Mickey, notes that the IV infusions have taken a toll on her daughter's health. "It comes with a whole host of problems," said Mickey. "It's really been knocking her liver out."

When Britenbeck's health permits, she attends New Testament Christian School, but those days are few and far between. "I lay down a lot," said Britenbeck. "I just deal with the pain and try to not think about it. It never fully goes away." When the pain intensifies, she takes pain medication or goes to the hospital.

A Transplant as a Last Resort

The only known cure for Britenbeck's condition is a digestive system transplant, but she and her mother have yet to decide whether to pursue that option. A transplant would give Britenbeck a new stomach, liver, pancreas, and intestines. However, the procedure is highly risky, and its effects may be short-lived. Without treatment, Britenbeck faces the possibility of small bowel failure.

"My plan was to let her be 18 years old to make that decision for herself," said her mother.

Mickey tearfully described how her family, including her three other children, prepares for the worst. "We don't talk about homework," said Mickey. "We talk about Macy dying."

A Moment to Celebrate

Despite the challenges ahead, Britenbeck's upcoming pageant appearance has given her family hope. "Any time I see her excited for something, I'll take that," said her mother.

"I've never done anything in my life like this, so it's exciting," said Britenbeck.

The teen recently went for a dress fitting at a friend's house, choosing a silver, sequined gown for her performance.

"I've never worn a real pretty dress, like a princess dress," she said. "It makes me feel like Cinderella, and I like it."

"This pageant...is like a birthday for her," added Mickey.

Local Support for Macy's Journey

Businesses in Britenbeck's community have stepped forward to provide the resources necessary for her pageant participation. Local vendors donated a portfolio photoshoot, hair styling, makeup, and jewelry. A family friend volunteered to create a website where Britenbeck shares her pageant journey.

The website also includes Britenbeck's story and allows visitors to donate funds towards her quest for the Miss Maryland crown.

Both daughter and mother are brimming with excitement. "I won't believe it until I see her on stage," said Mickey. "It's been a day-to-day thing of, 'Oh my gosh, are we really doing this?'"

Strong-spirit

Piyah Martell	Lucy Parke	Eran Thomson
Mithun Chauhan	Turia Pitt	Nina Ajdin