Sitting in a restaurant near her work, Christina Roettger shows us old home videos of her daughter Sophia. She tears up watch her daughter at happier times, walking and babbling. Now six years old, Sophia can no longer walk, talk, or feed herself. Her mother says her daughter’s health changed overnight when she was 18 months old.
“The seizures started, the night terrors started, the walking, she lost her walking,” Roettger recalled
Before the diagnosis her parents, who live in Tolland, had never heard of Rett Syndrome, a neurological disease affecting brain development in girls.
"Most doctors that we go to see for Sophia have never heard of it either. It's that rare,” said her mother. "I thought I'd be showing her the world and honestly, I have to show the world her."
Weekly doctor appointments, therapy, and school mean a lot of time spent in the van. As Sophia gets older, getting her in and out of the family's minivan has gotten more difficult. Her parents started a GoFundMe page to raise money for a $50,000 wheelchair accessible van. Money that would be impossible for her parents to save as they take turns staying home from work to care for their daughter.
"The poor thing, every time we get her in the vehicle she hits her head on the roof of the vehicle. It's really hard and uncomfortable for her,” said Roettger.
While they can’t give Sophie back her voice they’re hoping help from the community can at least make life more comfortable for their little girl.