Rare disorder cost her half her brain, but that doesn’t stop her from enjoying life
SEATTLE — On a sunny Sunday afternoon in May, Kelley Fox, 23, and her mom, Leslie, sit in the front yard of their home in Seattle, playing music while Kelley sings.
Her favorites are bubbly Top-40 hits by Taylor Swift, Bruno Mars and Justin Timberlake, along with Disney classics sung by princesses.
“She has an amazing memory, like, she loves music, she knows the words to all these songs,” Leslie says. “They’re not all perfect. They make me laugh sometimes, but she knows all the words,” the mom said, laughing.
Kelley has a rare genetic disorder called Tuberous Sclerosis and had her first seizure at 4 weeks old. She’s had two brain surgeries, including a full hemispherectomy, so she only has half a brain.
“She may be developmentally 5 1/2 or 6,” Leslie says, “but she has so much to offer, and she is such a happy person.”
Kelley attended Nathan Hale High School and did a school-to-work transition, but under law, adults with disabilities age out of the school system when they turn 21. Leslie was unsure how they would fill her time when that day came.
“So you have to start all over again,” she said. “Her father and I both work full time. Are we going to have to have full-time child care? She needs that structure and routine.”
Kelley started attending the Alyssa Burnett Adult Life Center in Bothell (ABC) two years ago, where she does classes like cooking, gardening, music and physical education three days a week with her caregiver, Sharon Acacio.
Acacio has been with Kelley for 12 years and has seen a positive change since she started attending ABC, outside of just the skills she’s picked up.
“I think she’s just a little bit more outgoing. I think she used to just want to sit back and watch and not really participate, but now, she really wants to join in and be part of the group,” Acacio says.
In May, ABC partnered with a few other organizations for adults with disabilities—The Tavon Center in Issaquah, Bridge of Promise in Carnation, and the Highland Community Center in Bellevue—to put on a Spring Fling dance for participants to come together and party.
ABC focuses on skill-building over recreation for their clients, so it is the first event they’ve done like this. “We wanted to have something that was more about inclusion,” said Tammy Mitchel, program manager for ABC.
The Highland Community Center in Bothell was decked out with streamers, laser lights and a pizza dinner. Hundreds of program participants and peer buddies danced together and did the crowd favorites like the Electric Slide, Cupid Shuffle, and a conga line. Kelley sung her favorite songs at top volume and twirled friends on the dance floor, continually urging Leslie to join her.
“When she does those things that are normal, or typical developing, it’s just, it’s so special,” said Leslie. She hopes with the progress Kelley’s made in the last few years that she may be able to live independently in a group setting someday.
“She can do it. I think that’s what I see. She can do more than you ever expect.”