SYRACUSE, N.Y. — In a Syracuse home filled with medical equipment, 11-year-old Mia and her family are facing a daily struggle that goes beyond her illness: the multistory split-level house where they live is difficult to navigate and makes it hard to keep her safe.
Mia is “totally dependent” on her mother, Teresa, who serves as her nurse, aide and medical manager. Teresa said the family’s living room has effectively become the center of Mia’s care.
“We have equipment throughout the house, but this is where we spend 100% of our day, unless we have doctor’s appointments,” she said.
Teresa described the overnight routine, saying Mia sleeps in the living room while she sleeps nearby to manage medications and feedings…