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Indiana teen with rare disorder gets to shine again at prom

February 6, 2019

CHESTERTON, Ind. (AP) — Tommy Benson and Sophia Burns’ friendship is similar to most.

When 16-year-old Sophia came to one of Tommy’s baseball games last year, Tommy gave her a home run ball he hit.

When Tommy graduated and moved to Florida to train at IMG Academy’s baseball program in Bradenton, he texted and called Sophia and her family regularly.

“We both enjoy being around each other, and we both enjoy making each other laugh,” Tommy said.

But, unlike most, Tommy and Sophia’s friendship started with the pair’s first prom.

When Sophia’s mom, Mimi Burke, learned of the Tim Tebow Foundation’s annual Night to Shine event, it was one more opportunity to bring some normalcy into her daughter’s anything-but-ordinary life.

Just before her fifth birthday, Sophia was diagnosed with Rett’s syndrome, a rare, genetic neurological disorder affecting speech and motor skills.

Rett’s syndrome — commonly diagnosed in young girls and first presenting symptoms in the first 6 to 18 months of life — exists on a spectrum. Some can feed themselves, stand with help and even walk. But, others like Sophia use a wheelchair, suffer regular seizures and have reduced motor function.

So when a friend told Mimi last year about the Night to Shine prom for people with special needs at Dyer’s Faith Church, the Crown Point mom quickly took to Facebook asking how to prepare for her oldest teen’s dance. She asked advice on where to find a dress — and a date. After all, Mimi thought, no teen wants to go to prom with her brother.

Within days, she had answers to both questions. A fellow mom pitched in to share her grown daughter’s sparkly, gold dress, and through a series of connections — Mimi’s niece’s best friend’s brother — Mimi found a date for her daughter, too. A senior baseball player from Chesterton who was just hoping to bring Mimi’s daughter a smile.

“Sometimes people have a hard time connecting with her, so when I heard she didn’t have a date, I knew it would probably be hard for her to find one,” the 19-year-old Chesterton High School graduate said of Sophia. “The least I could do is take her to prom.”

A year after the Night to Shine dance last February, Tommy and Sophia’s prom night has evolved into a full-fledged friendship.

The teens are planning their second prom together. Tommy flew in from Florida this week to take Sophia out again this Friday.

With this winter’s unpredictable weather, their families were afraid Tommy might not make it back. But, they bought a dress anyway, tried it on, and paired it with some sparkly Converse kicks.

Mimi tried not to get Sophia’s hopes up, and told her if Tommy couldn’t come, maybe they could find another date.

“She didn’t even really want to go,” Tommy said. “That made me really think, ‘Oh, I’ve gotta come back to make her happy again, because she deserves to be happy.’”

With a stroke of luck, Tommy’s flight made its window. He plans to see Sophia this week before the prom — complete with its red carpet and limo rides.

What Tommy is most looking forward to in seeing Sophia again, he said, is “to give her something she enjoys so much, to be a friend.”

Unable to talk, Sophia communicates using a device called a Tobii, which tracks eye movements to select and broadcast programmed words or phrases. A monitor in Sophia’s chest called a vagus nerve stimulator helps her regulate and monitor seizures. The teen can have as many as 20 a day, Mimi said.

“Cognitively they’re aware,” Mimi said of girls with Rett’s syndrome. “It’s like they’re trapped in a body that refuses to work for them.”

Sophia will live with the condition for the rest of her life. It’s taken time, but Mimi chooses to no longer to compare her daughter to other children. She’s come a long way from the shock of one doctor’s initial prognosis giving Sophia less than a year to live, but Mimi still lives with the knowledge that her daughter’s life will be different. She’ll never move out on her own, get married or have children.

“Sophia’s life isn’t easy,” Mimi said. “It’s not glamorous. She’s got a larger list of things that she can’t do than what she can do.”

So, Mimi focuses on small goals like taking Sophia water skiing or to her first concert — Taylor Swift.

But the real difference has come in friendships. As Tommy finished his last year at Chesterton, he visited Sophia at home and invited her to Chesterton’s baseball games. The team made it to semistate that year, and Sophia was in the crowd.

“When I got home from (last year’s) dance and saw how happy it made her, I thought, ‘I want to keep being in her life. I want to be a part of her life,’” Tommy said. “I want to keep her happy, and I want to be her friend.”

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Source: The Times

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Information from: The Times, http://www.nwitimes.com

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