NEW CASTLE —
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.