Brianna Burkett and her mother Yulinda Burkett pose at their home in Gibsonburg. Brianna has a rare genetic brain disease called Canavan Leukodystrophy. Yulinda is holding a prom for Brianna.
GIBSONBURG, Ohio -- With glossy long hair, subtle eye makeup, and dainty jewelry, Brianna Burkett in some ways leads the life of any 17-year-old.
But the Gibsonburg High School junior -- who was diagnosed with a rare genetic brain disease as an infant -- mostly is far from her classmates.
A dozen medications, physical therapy, and other medical assistance are needed to help Brianna battle Canavan Disease, a progressive and fatal illness. Brianna does not attend classes, but two teachers from School of Hope in Fremont take turns working with her at her home near Gibsonburg. The teen cannot walk, talk, or swallow, and she is legally blind.
Still, family and friends Saturday plan to make sure Brianna has one memorable rite of passage: a junior prom.
"I try to do what I can to make her life as normal as I can," said her mother, Yulinda Burkett. "She's a junior in high school, and what does a junior girl dream about but the prom?"
Ms. Burkett and roughly 60 others are putting on a prom for Brianna with a colorful Mardi Gras theme at Hilfiker Elementary School in Gibsonburg. Hours will be 3 p.m. to 7 p.m., because that is the time Brianna needs the least amount of special care, but there will be a photographer, disc jockey, and many other prom fixtures.
Brianna Burkett of Gibsonburg works with physical therapy assistant Rebecca BeVier.
Colleen Schlea of Helena helped Ms. Burkett make her daughter's purple, green, and gold dress. Because Brianna is 4 feet, 6 inches tall and weighs 72 pounds, the best friends had to alter a child's pattern to make the dress appropriate for a teen as her mother wanted, she said.
"She wanted something that looked kind of poufy and princessy," said Ms. Schlea, who plans to attend the prom with her husband. "It'll be fun."
Others pitched in to make Brianna's corsage and help with centerpieces, candy-filled glasses decorated with tulle, flowers, ribbons, and other embellishments. Mardi Gras beads and a five-foot mask with balloons serving as a backdrop for photos will round out the cheerful decorations.
Such revelry is far from what Ms. Burkett expected after her younger daughter was diagnosed with Canavan Disease, in which the body does not produce the brain's white matter, myelin. At the time, life expectancy was two to three years, a span that has since been increased to 3 to 10 years, with some patients living into their teens, Ms. Burkett said.
Ms. Burkett, who connects with other parents of those with Canavan Disease on Facebook, said one patient recently reached 30. Brianna needed scoliosis surgery in recent years to insert a rod to help make her back straighter, but now kidney stones are her biggest health concern, said Ms. Burkett, who is starting to think about celebrating the teen's 18th birthday, senior prom, and graduation.
"Knock on wood, she's been doing great," Ms. Burkett said. "This past winter, she had two very minor cases of bronchitis, but that's been the worst of it, other than the kidney stones."
Medical advances are helping those with Canavan Disease such as Brianna, who is tube-fed, needs frequent suctioning, and is prone to seizures. Her grandmother Belinda Burkett is her home health aide, and Ms. Burkett also gets help from her boyfriend, Thomas Cousino of Oak Harbor, and others.
Updates on Brianna's health can be found atcaringbridge.org/visit/BriannaNicholle once a month or so.
Instead of gifts for Brianna's sweet 16 birthday party, attendees donated nearly $1,000 toward Canavan Disease research, Ms. Burkett said.
A day-care provider, Ms. Burkett said Brianna inspires her family. Her sister, 21-year-old Donika Burkett, a lance corporal in the Marine Corps, wrote home during boot camp nearly two years ago that thinking of Brianna helped her get through.
Her own back problems and heel spurs are minor too, Ms. Burkett said.
"To me, it's no big deal because she's been through so much more," she said. "You don't really dwell on issues. You wake up, and you smile every day, and you stay that way."
Contact Julie M. McKinnon at: firstname.lastname@example.org or 419-724-6087.
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