Sixteen-year-old Macey Brietenback has a potentially-fatal disease called visceral myopathy
Sixteen-year-old Macey Brietenback has spent her whole life in and out of hospitals because of a rare, potentially-fatal disease that affects her gastrointestinal tract.
Her illness is called visceral myopathy with underlying pseudo obstruction, and it causes Macey intense intestinal pain that keeps her out of school most days.
But for one weekend at the end of the month she will be able to live the life of a normal teenager and participate in the Miss Maryland Teen USA pageant in Rockville, Maryland.
Macey rarely gets to dress up, and her community has pulled together to make the event special for her.
She told the Baltimore Sun that she is ecstatic about the chance to dress like a princess and wear high heels next weekend.
Macey’s illness was diagnosed while her mother Mickey was still pregnant with her, and she was originally given one week to live. Her case is severe, but the disease can sometimes be treated with medications.
Now 16, Macey has endured more than 70 surgeries to treat the illness, and doctors have warned that more operations ‘would do more harm than good’.
Macey now has to be fed intravenously through her heart because of the toll the disease has taken on her GI tract. Her mother talked about how hard this is on her daughter’s body.
Mickey said: ‘That comes with its own set of problems because it really stresses out the liver.’
Macey was diagnosed with the disease while her mother Mickey was still pregnant with her. She was originally only given one week to live
When Macey does get to go to school she attends New Covenant Christian School, but her time there is limited.
‘Most of my days are [just] me laying in bed and dealing with my pain and just trying not to think about it,’ she said. ‘I’m always at some level of pain.’ When this pain becomes intense Macey has to take painkillers or go to the hospital.
The only treatment for her condition right now is a digestive system transplant, but Macey and her mother have not reached a decision on whether or not to put her on the waiting list.
The transplant would provide Macey with a new stomach, liver and pancreas and new intestines. But the procedure might not work long-term, and it is risky. Without the transplant, Macey’s small bowel will fail.
Mickey, 49, told the Sun: ‘I’m trying to get her to 18 to make her own decision.’
She cried while talking about how her family, including Macey’s three siblings, is bracing for her daughter’s passing, saying: ‘We don’t talk about schoolwork. We talk about her death.’
At the end of this month, Macey will participate in the Miss Maryland Teen USA pageant in Rockville, Maryland
Macey attends New Covenant Christian School, but she does not get to go to school most days because of the severe pain her illness causes her
WHAT IS VISCERAL MYOPATHY?
The potentially-fatal disease that Macey lives with is a pathological condition that causes people’s intestines to fail to function properly.
Patients who suffer from VM experience a wide range of symptoms, including nausea, pain, vomiting and diarrhea.
It also causes recurring UTIs in some patients because it can affect the bladder muscles.
The disease affects both males and females.
Severe cases of the disease, such as Macey’s, must be treated with an intestinal transplant. But this can bring on a host of additional complications, including infection and organ rejection.
But the upcoming pageant has provided her family with hope. Mickey said: ‘Anytime I see her excited, that’s all I need.’
Macey echoed her elation, saying: ‘I never get to do anything special in my life, except for this, and I am really excited.’
She recently tried on dresses at a friend’s house and decided to wear a silver, glittery dress to the pageant.
‘I’ve never worn a dress this fancy and this princess-y,’ Macey said while trying it on. ‘It makes me feel like Cinderella, and I love it.’
‘This [pageant] is like her birthday present,’ Mickey said. Macey’s 16th birthday is today.
Macey, who rarely gets to dress up, wore high heels for the first time at the dress fitting.
Local businesses have chipped in to give her the resources she needs to compete in the pageant.
Different institutions have provided heat shot photography, jewelry, hair styling and make up services. Additionally, a family friend donated website building services to the cause.
The website displays Macey’s story and allows people to donate funds that go towards her pageant participation. Mickey is equally as excited for the pageant as her daughter.
She said: ‘I still won’t believe it until she walks across the stage. Every day is like, “Oh my god, can we make it?”‘