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September 30, 2013

Photos, Video, Story: Shenango homecoming queen Brittany Chieze considers herself ‘a pretty lucky girl’

NEW CASTLE — Rochelle Chieze admits she panicked at first when she learned her daughter had been placed on Shenango High’s Homecoming ballot.

“I started thinking about the germs from being around so many people and how tired this would make her,” Rochelle said. “Even though she was thrilled — we all were — I went back and forth. I thought maybe we should say no.”

But Brittany Chieze, wise well beyond her 17 years, knew what she needed to do.

“Let me live, mom,” Brittany said resolutely.

And so it was that Brittany Chieze was able to spend two days that may turn out to be the most beautiful of her life — days that also likely will rank among the most beautiful of everyone’s lives who were lucky enough to be a part of it.

A NIGHT TO REMEMBER

Brittany has not been able to attend Shenango High School since a debilitating neuromuscular disease left her fighting for her life three years ago.

But members of the school’s student body never forgot about the beautiful brunette who lights up a room with her smile, rallying around her during what would have been her senior year of school — first voting her onto Homecoming court, then showing their selflessness by naming her queen.

She was crowned during an emotional ceremony at halftime of Friday’s game against Our Lady of the Sacred Heart, then reigned at Saturday’s Homecoming Dance.

For one night, Brittany flew so high that the wheelchair that envelops her tiny, 60-pound body did not matter. The ventilator she uses to stay alive seemed to be invisible. And a lifetime of pain and medications and doctors were nothing more than distant memories.

“It was,” Rochelle said, “the best night of her life.”

THE DIAGNOSIS

Brittany seemed healthy when she was born in 1996, the fourth child of Rochelle and Art Chieze.

At about 18 months, when the Chiezes noticed that Brittany wasn’t yet walking, they took her to a pediatric doctor.

“The doctor said he thought her pelvis might be tilted a little bit and to bring her back in a year,” Rochelle said. “She started to walk shortly after that, though, so I thought she was OK.”

Rochelle and Art continued to notice, however, that Brittany seemed to fall often and, at age 4, when she was in a preschool play, Rochelle was alarmed when her daughter couldn’t make it up the steps on the way to the stage.

Again, she was taken to a doctor.

“He ran muscular tests, which were negative,” Rochelle said. He told us that girls are just uncoordinated sometimes and suggested we try physical therapy.”

It was in therapy that Rochelle’s concern mounted.

“She would just poop out, just totally lose her energy much too quickly for a child that age,” Rochelle said. “I knew for certain then that something was not right.”

Rochelle and Art took Brittany to Children’s Hospital in Pittsburgh, where a barrage of doctors with varying specialties watched videotapes of her and then examined her.

Doctors determined she had a neuromuscular disorder, although they said it was like none they ever had seen before.

“They were calling it Brittany’s disease,” Rochelle said. “That’s how unheard of it was.”

Next, the Chiezes tried Johns Hopkins Hospital in Baltimore, where doctors again were stumped, but told the Chiezes that Brittany should be fine long-term.

Their next stop was the Cleveland Clinic, where, finally, a possible diagnosis was made — Brittany appeared to have spinal muscular atrophy, a genetic disease characterized by progressive degeneration of motor neurons in the spinal cord, one that causes weakness and wasting of the muscles.

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