Baby born without eyes, diagnosed with rare genetic disorder
Wrenley Ice of Missouri was born without any eyes due to a rare genetic disorder. (Credit: Taylor Ice)
POPLAR BLUFF, Mo. - Robert and Taylor Ice of Missouri struggled for a year to get pregnant. When their daughter was born last November, they had to come to terms with a devastating diagnosis.
Their daughter, Wrenley, was both without eyes, a rare genetic disorder.
"I was just devastated at the thought of her being blind, and not only blind, but just not having any eyes or optic nerves at all," Taylor told FOX Television Stations. "So if there ever was any technology or anything, it probably wouldn't help her."
Robert and Taylor Ice posing with their daughter in the hospital. (Credit: Taylor Ice)
"When you first find out your child was born and doesn't have any eyes, it's very heart-wrenching," Robert added.
"I noticed that her eyes were shut"
The couple said even though it was a challenge to get pregnant, Taylor's pregnancy was mostly smooth.
But when Wrenley was born, Taylor became concerned that their daughter would not open her eyelids.
"I noticed that her eyes were shut, and she wasn't trying to open them or anything," Taylor added.
The hospital staff first told Taylor it was normal if babies didn't open their eyes right away. But as the days went on and more examinations were performed, doctors gave their final diagnosis.
Wrenley was diagnosed with haploinsufficiency of PRR12. She was born without eyeballs or optic nerves.
"I don't think my brain could have process what that meant," she said. "And I just burst into tears."
What is haploinsufficiency of PRR12?
According to the National Institutes of Health, haploinsufficiency of PRR12 is a gene disorder that affects the development of the eye and could also cause other developmental disorders.
The NIH classifies the disorder as "extremely rare," with only 24 known cases in the country.
"In PRR-12 disorder there’s a spectrum of how patients are affected by it," Geneticist Doctor Nate Jensen told KFVS. "Some patients with the same gene change have one eye affected and it might be totally absent like in Wrenley’s case, or it might just be smaller, and in this case, both of the eyes are affected and both are completely absent."
"She interacts like a normal baby"
The couple said once they brought their daughter home, they quickly realized their strength in raising a daughter who's blind.
"As I was taking care of her, I was like, ‘This is like taking care of a normal baby’," Taylor continued. "She eats like a normal baby. She sleeps like a normal baby. She interacts like a normal baby."
Taylor said she sometimes experiences a roller coaster of emotions, including anger and sadness. However, she has found support among other parents in similar situations.
The couple also believes their daughter will eventually live an independent life, like many other people who suffer from blindness.
In the meantime, they have set up a GoFundMe page to help with medical expenses.
"I'm hopeful that she's going to have a good life, and I don't think anything's going to get in her way," Taylor said.
This story was reported from Los Angeles.