Catrina Frost is on a mission to expose her daughter to as many colors and images as possible before she goes completely blind.
At 2 years old, Cailee Herrell of Phoenix was diagnosed with Familial exudative vitreoretinopathy, a rare genetic disorder that causes impaired vision and can develop into full blindness. She’s now 6 years old and has already undergone five laser surgeries, which is as much as she’s able to receive.
Frost’s good friend, Joy Ross, went blind eight years ago from uveitis, an inflammation of the eye’s middle layer. She asked what it’s like to go blind and if Cailee was going to be living in a black world. But Ross said she can still see images in her head.
After Cailee had a hemorrhage in December, they went to San Diego to see a specialist. While there, she got to visit the beach for the very first time.
“When we first got to the beach, we had to climb over a mound of sand and when we got over the hill she took a breath in and was just in awe,” Frost said.
They also went to the Imperial Sand Dunes in Brawley, California, where Cailee had a blast tumbling down and making sand angels.
In an effort to have Cailee experience as much as possible, Frost set up a GoFundMe campaign July 9. A Disney cast member named Brandy came across it and ended up planning an entire day for her at Disneyland.
Since Cailee loves Disney princesses, especially Belle from “Beauty and the Beast” (she often runs around the house singing songs from the musical), Brandy arranged a private meet and greet with every princess.
She got to look just like them, too! Candi Frost, her grandma, made Cailee her very own Belle dress.
“She was twirling in her dress from 8:30 a.m. to midnight,” Frost said. “It was by far the happiest I’ve ever seen her.”
In the upcoming months, they plan to see the redwood trees, “The Nutcracker” and take a hot air balloon ride in New Mexico. Her list also includes camping, fishing and taking art and cooking classes.
“My hope for Cailee is that she will have a memory bank of images and colors to pull from later in life,” Frost said. “As long as I can give her experiences and keep building her memories, I’ll keep doing it.”