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As disease takes her memory, Tampa's Brony Gala provides an escape

Fifteen-year-old Amy Bac sits on the floor of her room in Brandon, Fla., as she watches an episode of the fan-created YouTube adaptation of “My Little Pony,” fan fiction “Daughter of Discord,” on July 27, 2016. When she was 11, doctors diagnosed Amy with a spinocerebellar ataxia-type neurodegenerative disease, resulting in progressive loss of fine motor control. Christy Bac, Amy’s mom, said “My Little Pony,” helps her daughter keep her mind off of her pain. Amy, who is a “My Little Pony,” fan since she was 2, owns 5,015 plastic figures and 18 plushies of magical pony-themed series.
Fifteen-year-old Amy Bac sits on the floor of her room in Brandon, Fla., as she watches an episode of the fan-created YouTube adaptation of “My Little Pony,” fan fiction “Daughter of Discord,” on July 27, 2016. When she was 11, doctors diagnosed Amy with a spinocerebellar ataxia-type neurodegenerative disease, resulting in progressive loss of fine motor control. Christy Bac, Amy’s mom, said “My Little Pony,” helps her daughter keep her mind off of her pain. Amy, who is a “My Little Pony,” fan since she was 2, owns 5,015 plastic figures and 18 plushies of magical pony-themed series.
Published Aug. 14, 2016

BRANDON

Amy Bac's Rainbow Dash outfit had to be just right for her fourth trip to the Grand Brony Gala.

Her mom, Christy, found the baby blue ball gown on eBay and the rainbow accessories on Amazon.

"I hope we see Screwball there," Amy said.

On the ride to the Sheraton Tampa East where the Gala was held, Amy was mostly quiet. She poked at her iPad and asked it to "play My Little Pony songs."

She gasped when her parents wheeled her through the doors of the Sheraton on Sunday morning.

"Oh my gosh!" She said. "I see Fluttershy!"

She was home.

• • •

At age 3, Amy rode her Big Wheel like it was a monster truck in her parents' driveway.

Now 15, she's bound to a black and pink wheelchair. Her world is her pastel room filled with thousands of candy-colored ponies, plush dolls and a smart TV to play every episode of My Little Pony.

"She identifies with ponies, even though we might not identify with anything else in the world," Christy said.

Just three years ago, Amy was diagnosed with spinocerebellar ataxia, a neurodegenerative disease that is killing her brain.

Her parents watched her go from a rambunctious child who loved Disney, American Girl dolls and My Little Pony to a teenager who can no longer read, write or remember her age.

Her days are filled with long naps, hospice nurse visits and bingeing My Little Pony.

"We led a completely different life five years ago," Christy said. "Going out now is a luxury."

Though diagnosed with epilepsy at 10 months old, her parents still watched her learn to roll over, stand up and talk.

One morning Amy woke up slurring and stuttering. She was diagnosed with severe autism and ADHD.

Amy still excelled in school and sports. She swam, played soccer and joined the bowling team.

Every Saturday morning the three trekked to Walt Disney World in Orlando where Amy ran up the monorail ramp to get the perfect seat by the window.

Amy obsessed over The Lion King, Care Bears and My Little Pony.

Their home is covered with dozens pictures of Amy as Belle from Beauty and the Beast and standing next to Disney princesses.

At 8 years old, her IQ dropped 24 points. She couldn't remember her address, phone number or the names of the characters in pictures around her room.

The next diagnosis was lennox gastaut syndrome, a form of epilepsy with multiple types of seizures.

They still went to Disney, but her ride restrictions and prescription list grew longer.

Two years later, another MRI showed her brain was shrinking.

Instead of a growing healthy brain being loaded with knowledge and life experiences as she grew, Amy's brain deteriorated into dementia.

The names of Care Bears and Disney characters were gone. The only thing that stuck was My Little Pony.

"Ponies are an escape for us too, rather than facing the inevitable," Christy, said. "The only treatment we really have is My Little Pony."

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Within minutes of walking into the Gala on Sunday, Amy was talking to and asking for autographs from Flash Sentry, Twilight Sparkle and Sweetie Belle.

A young man in a green wig and purple suit jacket signed her book "Spike the dragon." She shouted answers and played games in the School of Friendship play before getting a picture with the cast.

Amy couldn't stop smiling and laughing.

In here, nobody gawks at Amy. There are no rude whispers or stares like when the family runs errands. She is just another one of the Bronies.

"We have a family with them," Christy said. "She doesn't have friends her age, but she has the Bronies."

Amy is still loud and rambunctious. But her fellow Bronies are patient. They stay in character to talk to her about episodes and sing songs.

The rest of Amy's year is preparation for this special day. When Amy is in pain, which she is most hours of the day, Christy reminds her, "just a few more weeks; just a few more days until the Brony Gala."

Christy and her husband, Chad, don't know how well Amy will be in a year or even a couple months. But they can find comfort in the fandom that brings such happiness to their daughter.

"You can't set your clock with this disease," Christy said. "But My Little Pony is the doorway to connect to Amy."