Catrina Frost has so far taken her young daughter to Disneyland and to the beach.
Catrina Frost wants her little girl to see as much of the world as she can before she can’t see anything at all.
Six-year-old Cailee Frost has a rare, genetic disease that is stealing her sight little by little, leaving her with distorted vision and "the eyes of a 70-year-old man," as one doctor has put it.
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The Arizona child has familial exudative vitreoretinopathy, or FEVR, which causes blood vessels in the eyes to grow alarmingly large, crowding the retinas and possibly leading to total blindness.
So since her daughter’s diagnosis at age 2, Catrina has been preparing for the worst. She took her girl to The Foundation for Blind Children, which helped her learn to use a cane and read braille.
And this summer, Catrina established a GoFundMe page to help Cailee stockpile a treasure chest of memories she can later unpack should she lose her eyesight.
The girly-girl who loves to dress up recently saw Disneyland, where she cavorted with Belle from Beauty and the Beast and wore a flowing yellow gown made by her grandmother.
Cailee has also been to the beach, frolicked in the Pacific Ocean and got dirty in the sand.
“I believe in miracles,” her mother told InsideEdition.com Monday. “I believe it might not happen,” she said, referring to blindness.
But in case it does, Catrina wants her daughter to be able to take care of herself, and to have a brain full of colorful images.
“That’s why I started the bucket list,” her mother said. “I wish everyone could meet her. She’s the happiest little brightest thing ever. Nothing keeps this little girl down. She’s been a fighter all her life.”
Beginning not long after she got here, six weeks early, landing her a new home in the neonatal intensive care unit.
Shortly after she was born, a nurse told Catrina her new daughter was "feisty," adding that the little girl "pulled her feeding tube out three times already."
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At 18 months, Cailee was taken for an eye test, where she was diagnosed as extremely far-sighted, her mother said.
Cailee’s older brother was also born premature and had experienced eye problems that resulted in him being fitted with special glasses.
For some reason, Catrina had a feeling that Cailee’s eyes were in far worse shape than her brother’s.
The mom took Cailee for a second opinion. That doctor feared she had the rare FEVR, and recommended surgery to examine her eyes internally.
The procedure confirmed that the Cailee did indeed suffer from the debilitating disorder.
She has never expressed sadness, or anger, over her condition. “She understands as much as she can at 6 years old,” her mom said. “She is included in every doctor’s visit. I don’t send her out. I want her to be empowered. I want her to be her own advocate.
“She’s not afraid of anything. I don’t know how to describe her. She believes in the power of music. She’s the first person to give people hugs,” her mother says.
Catrina had initially hoped to raise $10,000 for Cailee’s bucket-list adventures, but donations have exceeded that goal.
Cailee just started the first grade, but her upcoming adventures include a trip to the local firehouse, a journey to New Mexico where she might get to be part of a six-man crew on a hot air balloon and a camping trip in California where she can see majestic Redwood trees for the first time.
“The sky is kind of the limit,” her mother said.
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