New Castle News
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.”
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.
THE STRUGGLES INTENSIFY
Armed with a possible diagnosis, Rochelle and Art took Brittany back to Children’s Hospital, where a lung doctor examined her, agreeing she likely had SMA.
“Even then he wasn’t sure,” Rochelle said. “We had a lot of dead ends and still no real answers.”
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.
The Shenango district permitted Rochelle to serve as Brittany’s aide beginning in fifth grade. She was able to write until eighth grade, when the atrophy made her unable to control her hands. It was at age 14, while Brittany was in ninth grade, that her condition began to deteriorate rapidly. She began to go into respiratory distress.
“She was using all of her energy to breathe,” Rochelle said. “She was almost malnourished because she had no energy to eat.”
Brittany spent a month at Children’s, where doctors finally confirmed her SMA, intubating her and placing her on a ventilator. Her parents were given the choice of letting her continue to breathe on her own, or allowing doctors to perform a tracheotomy to place her permanently on a ventilator which would ease her breathing and likely lengthen her life.
“She accepted the wheelchair, but she really didn’t want the ventilator,” Rochelle said. “She loves to talk and she was afraid that would be taken away.
“We agonized over it before we decided we had to put her on a vent.”
FEELING RIGHT AT HOME
Brittany still is able to talk, although her loss of muscular control sometimes makes it tough to understand her words, so Rochelle usually is standing by to translate.
She has not been able to return to school since ninth grade, so Rochelle homeschools her.
The two are home all day together, which works fine for both of them. Rochelle’s mother, Louise, runs most of her errands, like shopping and banking, so she can stay with Brittany.
“She’s my buddy,” Rochelle said. “We hang out and talk and watch soap operas — ‘Young and the Restless’ is her favorite,” Rochelle said. “And we laugh a lot.”
Brittany is surrounded by love in her home. Brothers Bryan, 23, Bradley, 22, and Brett, 19, and 15-year-old sister, Brooke, are never far from her side.
“Brit doesn’t get any special treatment,” Rochelle said. “They all fight like cats and dogs some days.”
Brittany sleeps in a hospital bed downstairs and Rochelle carries her up the steps every night to bathe her.
Brittany keeps in touch with classmates through visits and Facebook. Her escort for Homecoming, Rocco Fiorilli, is a longtime friend.
“He’s not a boyfriend, just a friend,” Brittany said, adding with a laugh, “a really cute friend.”
Brittany shopped online for her Homecoming attire, choosing a black suit for Friday night’s crowning and a white dress for Saturday’s dance.
“We looked at a lot of suits and dresses,” Brittany said. “I wanted to look nice.”
Rochelle did Brittany’s makeup for the big day and family friend Tammy Rice came to the Chieze home to curl Brittany’s long, flowing brown hair.
The Chieze home was filled with well-wishers as Brittany prepared for her big night, and the family’s dining room table was filled with bouquets of flowers.
“I feel loved,” Brittany said.
Brittany comes by the Homecoming genes naturally. Her mother, the former Rochelle Roth, was Homecoming queen at New Castle High almost 30 years ago to the day of Brittany’s crowning, as was Fiorilli’s mother, the former Diana Oliphant, in 1982.
Brittany’s long-term prognosis is uncertain, although many SMA patients with an onset 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.”
News correspondent Joe Ligo shares "Brittany's Story."