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This Mom Is Taking Her 6-Year-Old Who Is Losing Her Vision On A Sightseeing Adventure

"Her middle name is Joy, and she encompasses that to the nth degree."

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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."

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."

"I realized those are the moments that she’s getting to feel the textures, getting to build those experiences," Frost said. "So that’s when I thought, I need to make a list — places we need to go, things that she needs to touch and see and experience."

Just a few days later, she took Cailee to SeaWorld and the beach, which would become the first two stops on their adventure.

“She had never seen the beach before," Frost said. "She was in total awe. She couldn’t believe how big it was.”

They stayed on the beach 'til sunset, jumping in waves and finding "heart rocks," which Cailee collects.

Frost launched a GoFundMe page on July 9 to help fund the list, and almost immediately got a message from a Disneyland cast member.

Catrina Frost

"She asked if she could help me with a Disneyland trip, and of course I said yes, I'd be honored," Frost said. "She set up personal meet and greets with every single princess. It was amazing — it was the happiest I'd ever seen Cailee."

They include camping, horseback riding, seeing The Nutcracker, attending a hot air balloon festival, visiting the Redwood forest, and even going to New York Fashion Week.

"Cailee's totally a girly-girl," Frost said. "She loves fashion and dressing up and makeup."

Frost is highly involved in raising awareness about visual impairment, and she said Cailee, as she's gotten older, has started showing an interest in getting involved too.

Catrina Frost

"She's getting more and more interested in speaking," she said. "At the last Lion's Club meeting we spoke at, she actually got up in front of the crowd. While we were driving home, she said at the next one, she wanted to speak more."

"Cailee is this happy-go-lucky, buoyant little girl who’s constantly singing and happy and a natural born cheerleader," Frost said.

Catrina Frost

"She keeps this family going. Her middle name is Joy, and she encompasses that to the nth degree," she said.

"I’ve gone from being handed a pamphlet when she was barely 2 years old and hearing, ‘Your child is going to go blind’ and just being petrified that her life was going to be horrible, to a place of knowing her life is going to be absolutely wonderful," she added.

Catrina Frost

"She is empowered, she is independent, she’s successful," she said. "It’s definitely been a journey that has taken us to a place that I didn’t even realize it would go."

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