A six-year-old girl with a rare genetic retinal disease is building visual memories with a “sightseeing bucket list.”
Cailee Herrell, from Sun City, Ariz., was diagnosed with FEVR (familial exudative vitreoretinopathy) when she was two years old. Since then, she’s undergone five surgeries to correct hemorrhaging in her retinas.
According to mom Catrina Frost, specialists say Cailee’s progressive vision loss will ultimately result in losing her vision altogether due to retinal detachment.
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Determined to give her daughter as many memories to bank, Frost decided to create the bucket list starting with a visit to the Pacific Ocean in California in January.
“Something kind of changed [on that trip] because I realized that the immediacy of building her memories was an important factor,” Frost told Global News.
On that trip, Cailee climbed sand dunes and played with penguins at Seaworld.
“It was understood at that time that there were other bigger events that I knew I needed to make happen for Cailee, something a little bit more extraordinary than I would be able to provide her with,” said Frost, who turned to Go Fund Me to crowdfund Cailee’s adventures.
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Last month, Cailee was able to meet her favourite princesses at Disneyland and she doesn’t plan on stopping there.
“We want to take her camping and fishing, take her to art classes, pottery…” said Frost. “Anything that would be fun and fulfilling that would give her some sort of tactile, texture building, memory experience that she could take away from that would help her in the future.”
Although Cailee’s diagnosis is difficult, she has been taking it all in stride adopting the motto: “Girls are tough!”
“Her middle name is Joy and this child encompasses everything with her middle name. She’s a natural born cheerleader,” said Frost.
“Cailee has had a fighting spirit since the moment she was born,” said Frost explaining that she was born six weeks premature. “That has set the tone for this little girl from then on. She’s known what she wanted to do from the minute she was born.”
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