Meet Cailee Frost, a 6-year-old in Phoenix living with a rare genetic eye disease that causes progressive vision loss.

 

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.

“Because Joy had all these experiences, she’s able to pull a vision from her memory,” Frost explained. “At that point, I wanted to put as much in front of Cailee as I could.”

It was during a road trip to see a FEVR specialist in California that Catrina had an idea: a “sightseeing” bucket list.

As they drove, they came across the Imperial Sand Dunes, miles of soft, beautiful sand sandwiched by smooth dessert on either side. And Cailee fell in love with them.

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The sun setting behind the Imperial Sand Dunes in California. Photo by David McNew/Getty Images.

“We pulled over and she ran up and down and up and down these sand dunes for like an hour. And got filthy dirty and made sand angels and had a blast. And it was really there that I realized I had to make myself a list of places that she should go and things that she should do. … If I hadn’t stopped and given her that experience, she would never have been able to pull from that memory, that soft sand, and what that looked like and felt like.”

When the two got to California, the specialist told them Cailee would likely lose all her vision within the next four or five years.

So when it came to this “bucket list” idea, it was now or never.

With help from donations brought in via a GoFundMe campaign, Cailee has been able to see the flowing gowns of princesses at Disney World…

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… the sparkling water of swimming pools …

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… crashing blue waves …

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… her first beach sunset …

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… and that’s really just the beginning.

You don’t need a visual memory to be able to perceive and interact with the world. But for Catrina, Cailee, and her three brothers (who are also along for the ride), the memories they make on these adventures will bring the family a lot of joy over the coming years.

“We’re still putting the list together,” Catrina said. “I’ve asked Cailee what she wants to do. She really wants to try horseback riding [again]. She wants to go to a ballet, so “The Nutcracker” is something I’m thinking about taking her to. I think she’d really enjoy that.”

Some day soon, Catrina will take the kids to see the giant California redwoods. Then, a fashion show. Then art class, rock-climbing class, cooking class.

And so many other things.

In the meantime, Catrina says they are preparing Cailee to go blind.

She has been practicing her cane skills and reading braille in school for years. So when the time comes, she’ll be ready.

“She came out of her third laser surgery when she was just this little, itty-bitty thing and said ‘Momma, girls are tough.'” Catrina recalled. “And I said ‘Yeah, baby, girls are tough.’ And that has been her motto.”

Catrina urges other parents to make sure their kids get their eyes checked early and often, but also that blindness, and conditions that can cause it, are not necessarily something to fear.

“Whether she’s sighted or not, I have no doubt this girl has amazing, amazing things coming in her future,” Catrina said. “I have no doubt.”

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About the Author

Brent Lindeque is the founder and editor in charge at Good Things Guy.

Recognised as one of the Mail and Guardian’s Top 200 Young South African’s as well as a Primedia LeadSA Hero, Brent is a change maker, thought leader, radio host, foodie, vlogger, writer and all round good guy.

1 comment

  1. I want Cailee to hear a story about my son. Ken was 31 in 2004 when he went blind from a head injury in Iraq. It didn’t stop Ken, though! He too learned to use a white cane while he had a bit of vision left, but Braille is very hard for him. He lives in Kyoto, Japan now with his wife, two little girls, his mischievous son and his mother-in-law whom they support. His wife has a very good job there, but I miss him and my grandchildren very much!

    Anyway, I wanted to let you know that my son can bowl – and he gets 236 out of 300 because he practiced bowling the same way a lot as he slowly lost his sight. He travels all over because he finds it a lot easier to memorize sounds and directions without the distraction of looking at everything. When he had his house in America he made a tool that he used to make the ceilings rounded instead of square, and he did all the remodel work himself by making tools work for him.

    He tells his little girls all the silly stories I read to him when he was a boy, and he teaches them how to be honest, kind and good people.

    So never fear that your life will be any less fun and useful, you can do absolutely anything just like my son!

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