Cailee’s Sightseeing Bucket List
Catrina Frost wants her daughter Cailee to see her dreams before she loses her sight.
Cailee Herrell, daughter of Catrina Frost, was diagnosed with Familial Exudative Vitreoretinopathy (FEVR) at the age of two.
“We got involved with the Foundation Fighting Blindness when Cailee was three years old,” says Catrina. “Cailee started working with a teacher, to help her learn to use a cane for mobility and read braille, who invited us to the Arizona VisionWalk Kickoff. After the kickoff, we formed the team “Cailee’s Corner” to participate in the Arizona VisionWalk.”
After the “Cailee’s Corner” team participated in their first VisionWalk, Catrina became the Arizona VisionWalk Chair. Catrina also became Director of Development at nonprofit organization, VisionQuest 20/20, and conducts vision screenings for children at the VisionWalk to show the importance of early detection.
Cailee is now in first grade and thriving, but after she had a retinal hemorrhage last winter, Catrina took her to see a specialist in San Diego. The specialist told them the extent of Cailee’s damage due to the five laser surgeries she’d had and gave Cailee only about four years until she loses her ability to see all together.
After this news, Catrina’s biggest fear was that Cailee would be living in a world of black and darkness when she goes blind. So Catrina asked her friend Joy, who went blind eight years ago due to uveitis, what it is like to lose vision and what she sees.
“Joy described that she still has color recognition and encouraged me to give Cailee as many memories as I can,” says Catrina. “That’s how my idea to put as much in front of Cailee started.”
Their first sightseeing trip was to Disneyland in July 2016, where Cailee got to meet all the princesses in the park. From there, Catrina set up a GoFundMe page for Cailee to continue her “Sightseeing Bucket List,” which has now raised over $12,000 and has been featured in articles on Huffington Post, Today Show, ABC News and more.
Since Cailee’s “Sightseeing Bucket List” began, she has had the opportunity to see and participate in the Ballet Arizona’s Nutcracker, watch a Phoenix Suns basketball game, visit the Golden Gate Bridge in San Francisco, and even see snow for the first time.
Catrina’s been so thankful for these new experiences Cailee has had, but she is even more thankful that this “fame” has helped introduce them to more families living with rare retinal degenerative diseases.
“We now have a family support network for other parents and children that feel alone with their diagnosis,” says Catrina. “We’ve met five families that we’re still in contact with and that is what has motivated me to keep getting involved and raise awareness for retinal diseases in my community.”
Follow Cailee’s journey and join the Cailee’s Corner community for those living with visual impairment needing support and resources by visiting their Facebook page at https://www.facebook.com/cailees.corner.