Except Rosie’s chair is a wheelchair, not a dining room chair. And today she’s finding it hard to keep her head up.
Doctors told John and Rosemarie Ingeme their daughter would never see and would never walk.
But, Rosie, 40, is thriving.
“I was told she would have the intellect of a 5-year-old,” her mom says. “They gave me no hope.”
Rosie had heart failure when just 3 years old, the result of a heart defect. Surgery corrected a faulty valve, but her parents say the late diagnosis and treatment caused pulmonary stenosis, brain damage and cerebral palsy.
“It affected her whole right side and she’s legally blind,” her mom says.
Her parents have been a team in relentless search for services for their daughter.
“We’re fierce advocates; it never stops,” John says.
In 2012 the Ingemes turned to the CLASS Adult Family Care program for help. AFC provides multiple supports funded by MassHealth, including clinical and financial assistance to qualified caregivers. The financial assistance helped with Rosie’s assistive technology that helps her through her day.
“She had a stroke in 2005 and gained weight from the meds they put her on, and that makes it hard for her to get around,” John says. “So we bought a mobile shower chair, a new wheelchair and a new transport chair for her.”
The AFC flex spending made it possible to buy Rosie a computer with a touch screen for communications.
“The Adult Family Care program has been very good for us,” says Rosemarie, 71, who retired after 25 years of service from Lahey Clinic in 2009. “We also hired a home health attendant, so we can ease off the more physical part of Rosie’s care.”
“We’re later in life, retired on a fixed income, so we need that,” says John, 74, who worked two to three jobs when all four of his kids were living at home. “It helps us pick up the slack and get a necessary break.”
And Adult Family Care is working for them.