Iowa parents aim to show daughter wonders of world before she goes blind
Breia Lastovka is one of only 1,200 people worldwide diagnosed with Alstrom syndrome. It's disease that will eventually steal her eyesight and possibly her hearing – both of which have already begun to deteriorate.
Breia's vision journey
Breia Lastovka's mom and dad spent six years trying to figure out what was wrong with their daughter's eyes. They were shocked to find out that she would eventually go completely blind and possibly lose her hearing.
GRANGER, Iowa – Miss B is waiting for the day she's able to dance with her dad under the lights of the Eiffel Tower in Paris before the sights and sounds around her go dark.
Thousands of miles separate her from that dream in Granger, Iowa, located a short drive north of Des Moines. It's the same place where locals gave Breia Lastovka her fun and bubbly nickname that meets her personality even more.
Closer to home, the small-town Midwest girl also wants to ride a horse through the mountains of Colorado and see the bright lights of Times Square.
"It could be next week. It could be 20 years from now," said her mother, Alyssa Lastovka, as she tried to hold back her emotions. "We always hope that it'll be the longest. We don't have a choice in it. It's not up to us."
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In Granger, Iowa, locals call the fun and bubbly 6-year-old "Miss B," (second from left) short for Breia Lastovka.
(Alyssa Lastovka)
Short but full of love
Breia's short for her age, her parents say, but don't let that fool you for how much love she holds in her heart.
Her mom and dad spent six years trying to figure out what was wrong with their daughter's eyes. They were shocked to find out that she would eventually go completely blind and possibly lose her hearing.
Breia is one of only 1,200 people worldwide diagnosed with Alstrom syndrome. It's a disease that also brings obstacles of possible heart issues, obesity, short stature and diabetes.
"It's incredibly rare," her mother, Alyssa Lastovka, said. "They told us that there will be no cure in my lifetime and most likely no cure in Breia's lifetime."
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Breia is one of only 1,200 people worldwide diagnosed with Alstrom syndrome.
(Alyssa Lastovka)
When Breia was about 3 months old, her parents noticed that her eyes moved very quickly. It almost looked like she was rolling or darting her eyes back and forth.
Her pediatrician referred her to a specialist eye doctor, but they couldn't figure out what was causing it.
"They were worried it was something with her brain," Lastovka said. "So we were sent to the children's hospital in Iowa City to see a neurologist."
Breia went on to see a neurologist and oncologist after doctors were worried that she had cancer.
"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," Breia's mom said.
Yet, her condition continued to dumbfound doctors until she was referred to another specialist in July 2021.
"One look at Breia, and she said, 'I think I know what's wrong with her,'" Lastovka said.
When Breia was about 3 months old, her parents noticed that her eyes moved very quickly. It almost looked like she was rolling or darting her eyes back and forth.
(Alyssa Lastovka)
Black and white
After numerous scans and a 45-minute test with wires strapped to her eye, doctors realized that Breia could only see in black and white. She was born without any cones in her eyes, which help see color.
After the diagnosis in October 2022, doctors told Breia's parents to let her live every day like she would lose her vision tomorrow – because she might.
Last year, Breia checked the first item on her list of things to see before she goes blind. She wanted to see Cinderella Castle at Disney World, so her parents made that check mark happen.
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Breia and her family visited Cinderella Castle at Disney World in Florida last year.
(Alyssa Lastovka)
The Lastovkas spent a week in Florida outside the theme parks, where Breia saw the ocean waters of the Gulf of Mexico for the first time. She didn't care that the water appeared gray. Hearing the sound of the waves crashing against the shore and feeling the sand between her toes was enough to make her heart happy.
Next up on her list is the Hollywood sign in California. She also wants to see the Rockefeller Center Christmas Tree sparkle after Thanksgiving.
"Even though she doesn't see color, she can tell when there are lights on," Lastovka said. "She wants to see the big buildings in New York."
Let's not forget about Kansas City and North Carolina on her bucket list.
"I don't know why," her mother laughed. "She just put it on the list. She's really simple."
After that, Breia wants to see Niagara Falls and a lighthouse.
"She just wants to see so many cool things that I hope that she gets the chance to see them," her mom adds.
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Breia's mom, Alyssa Lastovka, said she will continue to remind parents like herself to keep advocating and pushing for their children.
(Alyssa Lastovka)
More than $7,000 has been raised by strangers on GoFundMe to help Breia see all her world wonders to capture memories until she goes fully blind.
Until that hour comes, Lastovka said she will continue to remind parents like herself to keep advocating and pushing for their children.
"You are their voice," she 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."