NewburyportNews.com, Newburyport, MA

September 30, 2013

Teen with neuromuscular disease crowned homecoming queen

by Kayleen Cubbal
CNHI News Service

NEW CASTLE, Pa. — Brittany Chieze has not been able to attend Shenango High School in New Castle, Pa., 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.

The 17-year-old was crowned during an emotional ceremony at halftime of Friday's game, then reigned at Saturday's homecoming dance.

For one weekend, 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," her mother said, "the best night of her life."

Rochelle Chieze admits she panicked at first when she learned her daughter had been placed on the school'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 knew what she needed to do.

"Let me live, mom," Brittany said resolutely.

Brittany seemed healthy when she was born in 1996, the fourth child of Rochelle and Art Chieze. But her parents began to worry when she was slow to start walking, and fell down frequently as a preschooler.

It took trips to several doctors and hospitals in Pittsburgh, Baltimore and Cleveland before Brittany was diagnosed with 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.

Brittany's muscles continued to atrophy and, by age 8, when she was in third grade, she began to lose her ability to get around. The Chiezes found that a wheelchair was the only choice. At age 14, she was placed on a ventilator and was not able to return to school.

Brittany keeps in touch with classmates through visits and Facebook. Her escort for homecoming, Rocco Fiorilli, was a longtime friend.

"He's not a boyfriend, just a friend," Brittany said, adding with a laugh, "a really cute friend."

Brittany's long-term prognosis is uncertain, although many patients with conditions similar to hers do not live more than 10 to 14 years.

Rochelle said Brittany does not dwell on the negative, and that is what sustains them.

"She's a happy person," Rochelle said. "She has an unbelievable attitude and it is contagious to everyone around her. She has been through a lot in her young life and has never complained."

Brittany simply refuses to give in to her disease.

"I live one day at a time," Brittany said with a smile that sparkled as much as her crown. "That's all you can do. I think I'm a pretty lucky girl."

Kayleen Cubbal writes for The New Castle (Pa.) News.