“Her middle name is Joy, and she encompasses that to the nth degree.”
Meet Cailee Frost, a 6-year-old in Phoenix living with a rare genetic eye disease that causes progressive vision loss.
Cailee was diagnosed with the disease, called FEVR (familial exudative vitreoretinopathy), at 18 months, when she first got her vision checked based on “a very strange motherly gut instinct,” her mother, Catrina Frost, told BuzzFeed News.
She said it is likely that Cailee will eventually become blind within five years, but it's impossible to know for sure.
“We rode this roller coaster for a really long time,” she said. “It could be now, it could be five years from now, it could be 10 years from now, it could be never.”
Frost has made her daughter a “sightseeing bucket list” and is aiming to check off every item while Cailee still has her vision.
The idea came to Frost during a drive to a doctor's appointment in California, when she pointed out the Imperial Sand Dunes and told Cailee “that's where sand castles come from.”
“We stopped there, and there was no one else there,” Frost said. “The sand was just beautiful and untouched. She just ran up and down the sand dunes for close to an hour. She was filthy, dirty, rolling around, making sand angels. It was a glorious, beautiful time.”