Phoenix girl who is going blind creates ‘visual bucket list’ to fill her head with memories
- Cailee Herrell has a rare genetic condition which will cause her to go blind
- The heart-warming list included fulfilling her dream holiday to Disneyland
- Now they plan to take Cailee horseback riding, rock climbing and hiking
- To prepare her for going blind, she has had lessons in how to use a cane
Stephen Matthews For Mailonline
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A mother has planned a ‘sightseeing bucket list’ for her daughter who has an incurable eye condition which will cause her to go blind.
At just two years old, Cailee Herrell was diagnosed with the rare disease Familial Exudative Vitreoretinopathy (FEVR), which causes progressive vision loss.
But before the six-year-old loses her sight completely, her family want to fill her memory bank for the future.
The heart-warming list included Cailee’s first trip to the ocean and fulfilling her dream of a magical holiday to Disneyland.
The heart-warming bucket list included Cailee Herrell’s first trip to the ocean and fulfilling her dream of a magical holiday to Disneyland
The girl from Phoenix, Arizona, was diagnosed with Familial Exudative Vitreoretinopathy, a rare genetic condition which causes progressive vision loss (left). But to prepare her for going blind, she has become familiar with a cane (right) and has had braille lessons
Her mother Catrina Frost, from Phoenix, Arizona, said: ‘My friend lost her vision eight years ago – I can’t imagine what it’s like and so I asked her if it was just black.
‘She told me it wasn’t because she has memory vision so if I say I’m wearing a yellow shirt, her mind will see it.
‘Her memory bank is full and that’s why we created the sighting seeing bucket list – it’s not just adventures but it’s important for her future.
‘I want to give Cailee as much as possible – and not just introduce her to the rainbow colours, but give her terracotta and crimson.’
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The first item to cross off the bucket list, which started in January, was a trip to the ocean in San Diego.
On the way they drove past the Imperial sand dunes and Ms Frost said: ‘The first thing she wanted to do was see the sand dunes.
‘She ran up and down and made sand angels. It was also the first time she saw the ocean.
‘She took the biggest breath in. Her face was just priceless.’
And last week the family drove to Disneyland so Cailee could tick off meeting her favourite princesses.
Her mother thanked Brandy, a worker at Disneyland, who she claims went out of her way to give her daughter the best experience.
Cailee had a personal meet and greet with every princess and was in awe because she thinks they are real.
Ms Frost suspected something was wrong with her daughter’s eye when she was just six months old after noticing it was off centre in photographs (pictured at the ocean)
Ms Frost suspected something was wrong with her daughter’s eye when she was just six months old after noticing it was off centre in photographs.
Shortly after, Cailee was diagnosed with short-vision but she wasn’t satisfied and opted for a second opinion.
CAILEE’S BUCKET LIST
– Seeing the ocean
– Imperial sand dunes
– Disneyland
– Sea world
– Horse riding
– Rock climbing
– Hiking
The second doctor noticed a problem with Cailee’s retina and diagnosed her with FEVR, warning she could go blind any day.
Since she was three years old, she has endured five laser operations to correct retinal haemorrhages.
Ms Frost said: ‘It’s been an emotional roller-coaster as I tried to wrap my head around my daughter going blind, and not knowing when it is going to happen.
‘I am so tearful when I think about it. No parent wants to see their child lose their sight.
‘I would trade places with her in a heartbeat.’
In January, Cailee was taken to San Diego Shiley Eye Institute to see one of the few experts researching her disease.
The experts warned her retina would detach as her eyeball grew with age, causing the loss of sight.
The first item to cross off the bucket list, which started in January, was a trip to the ocean in San Diego (Cailee pictured jumping up and down)
Since she was three years old, she has endured five laser operations to correct retinal haemorrhages (pictured with a blind therapy puppy)
Plans are in place take Cailee to camps for visual impairments where she can go horseback riding, rock climbing and hiking (pictured meeting Cinderella in Disneyland)
To prepare her daughter, Ms Frost made sure she received early intervention which included cane skills and lessons in braille.
Now they plan to take Cailee to camps for visual impairments where she can go horseback riding, rock climbing and hiking.
Ms Frost added: ‘When Cailee was just three she reminded me “girls are tough, mum”.
‘Her middle name is Joy and she always encompasses that. She’s always happy and always singing.
‘Whether she has vision or not I want her to grow up happiness, healthy, successful and independent woman.
‘We all just want the same for children – that doesn’t change because she visually impaired.’
The family are hoping to raise more funds to help complete the bucket list via https://www.gofundme.com/2dnbd2sk
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