‘We’re taking our 6yo on her dream holiday before she goes completely blind’

“Breia wants to see so many cool things … I hope that she gets the chance to see them,” Mum Alyssa shares.

Alexandra Feiam

3 min read

July 17, 2023 - 1:48PM

Breia is ready to travel the world before permanently losing her eyesight. Source: Fox Weather/GoFundMe

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Breia was six years old when she was told she would lose her eyesight entirely.

But when she was three months old, her parents already knew something was wrong with her eyes.

“We noticed that her eyes moved really quickly,” her mum, Alyssa, said. “So, they would dart from side to side. She would kind of roll her eyes a lot.”

Taken to hospital in Iowa City, doctors were afraid she had cancer.

Breia (second from left) was diagnosed with Alström syndrome in October 2022. Source: Fox Weather

6yo girl will eventually go completely blind

“They ran tests on her spinal taps, MRIs, blood tests, urine tests, every test you could think of to try to find out what was wrong with her,” her mum explained.

Doctors discovered Breia has no cones in her eyes, meaning she can only see in black and white.

It wasn’t until October 2022 that she was diagnosed with Alström syndrome, an extremely rare genetic disorder that affects roughly one in one million people.

Sadly, there is no known cure.

Alström syndrome affects eyesight and can also lead to heart and kidney issues, obesity, diabetes, short stature and hearing loss, which she is already experiencing in her right ear.

Breia has begun losing her eyesight and has to wear dark glasses to protect her eyes from the light.

She has also started learning Braille as she prepares for a life of blindness.

"They told us that there will be no cure in my lifetime and most likely no cure in Breia’s lifetime," Alyssa said.

Breia will eventually lose her eyesight entirely. Source: Fox Weather

“We don’t know when she will go blind … we don’t have a choice in it”

Breia’s blindness will only get worse, her mum said. However, doctors can’t confirm when she will completely lose her sight.

“They have no idea,” she said. “She could go blind next week, or it could be 20 years. We always hope that it’ll be the longest. We don’t have a choice in it. It’s not up to us.”

Breia’s parents frequently tell her that she can “do whatever she wants” in her life.

“The world is hers,” said Dad Sean. “We will do whatever we can to make sure she is able to do everything she wants.”

Her doctor told her family to let Breia see everything she wants as if she’ll go blind tomorrow - because it could be the case.

So that’s what they’re doing.

Breia's family are taking her on a trip of a lifetime. Source: GoFundMe

“Even though she can’t see colour, she can see the lights”

First, they visited Cinderella’s Castle at Disney World in Florida and enjoyed the crashing waves on the Gulf of Mexico.

Next up is checking out the Hollywood sign in California and seeing the Christmas lights at the Rockefeller Centre in New York City.

“Even though she doesn’t see colour, she can tell when there are lights on,” Alyssa explained.

She also wants to dance with her dad under the lights of the Eiffel Tower, watch the beauty of Niagara Falls and ride a horse through the mountains in Colorado.

“She just wants to see so many cool things that I hope that she gets the chance to see them,” Alyssa said.

The family has set up a GoFundMe to support their daughter’s dreams and hope they can get through her long list of adventures before she loses her sight completely.

“You are their voice,” Alyssa said. “You have to do everything that you can to make sure that they are taken care of … I promise there is support out there.”