One mom is determined to create a “memory bank” of images for her daughter who is losing her vision.
Cailee Herrell of Phoenix was diagnosed with familial exudative vitreoretinopathy, also known as FEVR, at the age of 2. According to the Genetics Home Reference, it is a “hereditary disorder that can cause progressive vision loss” and, in some cases, eventual blindness due to retinal detachment. Catrina Frost, Cailee’s mom, told The Huffington Post that her 6-year-old currently “has a great deal of vision,” but has already had five laser surgeries to help with her disorder and had a significant retinal hemorrhage last winter. Before her daughter loses more of her vision, Frost created a “sightseeing bucket list” for her.
Frost was inspired to create the list for Cailee because of her friend Joy Ross, who lost her vision eight years ago. Frost asked Ross what it was like to lose her ability to see.
“I asked Joy if it just went black when she lost her vision, I wanted to know if Cailee was going to live in the dark,” Frost said. “Joy described for me how she can recall colors and images because of her memories.”
During a trip to see a specialist in San Diego, Cailee started checking items off her list by visiting Sea World and experiencing the beach and ocean for the first time. She has also been to Disneyland where she met her favorite Disney princess, Belle, in a custom Belle dress her grandmother made for her.
“She was so excited to meet and talk to each princess and everyone was so amazing and took so much time with her,” Frost said. “It really was a magical day for her.”
Cailee’s list also includes camping, fishing and art and cooking classes. Frost wants to take her daughter to see the redwoods in California, too. By exposing her to these things, Frost hopes Cailee will not only create unforgettable memories, but add them to her “memory bank for her to pull from in her future.”