Teen with rare, incurable disease becomes queen of own prom
PUEBLO, Colo. - Ever since she was a kid, 13-year-old Amaria Granger wanted to become a prom queen.
But in February 2018, life dealt a devastating blow when she was diagnosed with Niemann Pick Disease Type C, a rare progressive genetic disorder characterized by an inability of the body to transport cholesterol and other fatty substances (lipids) inside of cells.
"She went from being completely normal...running and playing like everyone else," her mother, Mandy Baxter, told FOX Television Stations. "She now has scoliosis so bad that she can’t stand up alright. She’s lost all the tone in her legs."
"She already can’t speak," Baxter continued. "It’s not pretty."
According to the Mayo Clinic, there is no known cure or available treatment as the disease gets progressively worse and is sometimes fatal.
But rather than sulk about the prognosis, Baxter decided to help her wheelchair-bound daughter fulfill her lifelong dream and throw her a prom last week in conjunction with her upcoming 14th birthday later this month.
"When she was in kindergarten, she used to always say that she was going to be prom queen," Baxter explained. "All of her favorite movies were like ‘High School Musical,’ ‘Teen Beach,’ all those movies were like her favorite."
"She used to pretend like she was in a pageant, walking down the red carpet," she added.
Her mother rented out the Eagleridge Event Center in Pueblo, Colorado, but then administrators donated the space for free.
The prom was a Hollywood-type event complete with a red carpet, DJ, and a photo booth. Amaria’s therapists, students from nearby schools and other disabled children from the HopeKids local chapter attended. There was dancing, food and anything else that make up a traditional school prom.
"So I decided that I was going to try and give her all of that on her birthday while she can still walk and dance with me," Baxter said. "I wanted her to have that."
Baxter said the event was a huge success with her daughter even dancing with some assistance.
"She insisted on getting up [out of her wheelchair] and moving around on that dance floor," Baxter said.
And to top off the special night, Baxter crowned her daughter prom queen. A prom king was also crowned to her friend, Chase, who suffers from autism.
"I had to step outside and cry more than once, especially when I saw her have her very first dance with a boy," Baxter said.
Living with Niemann Pick Disease Type C
Baxter described her daughter as completely normal growing up.
However, Amaria had her first seizure in April 2017 and her condition worsened ever since.
"It’s like every seizure took some of her away," Baxter said.
Baxter said about six months after that diagnosis, her daughter could no longer speak, but she knows the worst is yet to come.
"She’s going to lose her complete ability to walk very soon," Baxter added.
To help with her care, one of Amaria’s brothers transferred colleges to obtain his nursing degree and became his sister’s nurse.
"Right now, the best thing we can do is manage her symptoms and take advantage of all the time that we have," Baxter said.
The Mayo Clinic said the disease is inherited with patients losing the function of nerves, the brain and other organs. Symptoms also include clumsiness and difficulty walking, excessive muscle contractions (dystonia) or eye movements and recurrent pneumonia.
There’s also NPC Type A and B with varying symptoms and severity of the disease.
According to sciencedirect.com, about 1 per million people in the U. S. are diagnosed and/or miglustat-treated for NPC.
Understanding disability
Baxter said she now plans to hold prom for other disabled children annually.
"The smallest things that we can do as a community make a huge impact," she said.
Baxter said disabled children are often not invited to events due to their physical limitations and therefore never have a reason to dress up and feel special, but she’s hoping to change that notion with the prom.
"I hope more people pay attention to the kids with disabilities in their communities, make an effort to be inclusive," she explained. "Just pay attention to each other and take care of each other. It’s not as cold as we think it is out there. "
This story was reported from Los Angeles.