Today, Taylor hides from sound, even sleeping with headphones on.
"I'd like to be able to go to school and school events, participate in all my sports that I used to love, and hang out with friends and go out to dinner with my family," she told "20/20."
But, she said, "90 percent of my life is probably in my bedroom."
There has been a positive step recently: Taylor returned to a dance class she loves. The loud music that plays during the class muffles the sounds that could upset her.
Taylor has also been encouraged to try white noise ear buds and Cognitive Behavioral Therapy, a form of psychotherapy that aims to help patients by changing their thinking and emotional responses.
Bernadette remains hopeful.
"I feel that Taylor's such a strong, courageous kid, that she is going to help find a cure. And that's what I keep in the back of my head," she said. "She's going to be part of this. She's going to help others."
Watch the full story on "20/20" Friday at 10 p.m. ET.