Erin is a sweet 6-year-old with big, smiling eyes. Her favorite activities include swimming, swinging in the park, and going to the zoo. She and her mom, Nelvia, and her two older sisters, live in Verona, just outside of Pittsburgh. Just like an average little girl, Erin enjoys being outside and interacting with other children.
But unlike most other children, Erin has spastic quad cerebral palsy, which developed after having bacterial meningitis when she was only a few days old.
A Trying Journey
Erin was born prematurely, so she was unable to fight off the severe infection, which damaged over 70% of her brain. She is unable to walk or feed herself, so she will need total care and assistance for the rest of her life. Erin also has a few medical issues, so she visits UPMC Children’s Hospital of Pittsburgh several times a month to be seen in many different departments, including neurology, clinical nutrition, and otolaryngology. “Dr. [Vibha] Sood is one of our favorite physicians in the gastroenterology department. She takes her time with Erin, and really listens to what we have to say,” says Nelvia.
Finding Her Way
Erin is nonverbal and has learned to use her beautiful brown eyes to communicate through a specialized eye tracking software program called Tobii Eye Gaze. This program is installed on Erin’s iPad, and it allows her to communicate using her own eye movements.
“Her favorite things to say are ‘all done’ and ‘not want,’ which she likes to tell her teachers when they ask her to do her work at school,” Nelvia recalls with a giggle. “Most people don’t realize that in many ways, Erin is just like other kids. She’s more limited physically, but she’s funny and she lets us know what she likes and what she doesn’t like.”
Support for Complex Care
Nelvia does everything she can to ensure that Erin lives the best life possible. She explains that her family’s journey with the health care system has not been without it challenges. Nelvia feels that children with complex medical needs are often overlooked. Consequently, the single mom of three makes it her mission to be a vocal advocate for her daughter.
Despite any difficulties she has faced, Nelvia is grateful to live so close to UPMC Children’s, since Erin is seen at the hospital so often. “I’ve thought about moving out of state a few times, but I know that UPMC Children’s is one of the top hospitals in the country. Erin requires such complex care that I wouldn’t want her to be treated anywhere else,” Nelvia says emphatically. “We’ve gotten to know so many wonderful doctors at UPMC Children’s. We’re staying right here!”