The infant has a rare genetic disease known to affect only 30 people worldwide.

A Missouri girl was born with a genetic disorder that affects only 30 people worldwide, resulting in the loss of both eyes.

Taylor Ice was overjoyed when she became pregnant last year after more than a year of infertility treatments.

Throughout her pregnancy, Mrs Ice and her husband Robert were told by doctors that their baby girl was perfectly healthy.

But when Renly was born on November 6, 2023, his parents knew something was wrong.

“I noticed she wasn’t opening her eyes, so I asked the nurse,” Ice told local news station KFVS 12.

“She told me, ‘It’s dark inside the womb, so you usually don’t open your eyes right away.’

But Renly never opened his eyes.

“The pediatrician was examining the baby and he just stopped and looked up at us and said, ‘Your daughter has no eyes,'” Mrs. Ice said.

“I looked at him and said, ‘Do you mean they’re small?’ He said, ‘No, they’re not there.’

“I didn’t fully understand what it meant at the time and I just started crying.”

Mrs. Ice had just given birth by C-section, but the family drove 150 miles away that same day to St. Louis Children’s Hospital, where they spent nine days searching for answers.

“It was confusing for me because one diagnosis led to another and it was actually within that diagnosis,” Ice said.

“It was just as much to absorb at once. So every time we got a new diagnosis, we were just researching.”

In the end, doctors determined that Renly was born with anophthalmia. The disease caused her to not develop her eye tissue or the optic nerve, which processes visual information in her brain.

She also doesn’t produce cortisol, the stress hormone produced by the adrenal glands.

All this caused her eyes to close.

“I couldn’t believe something like that happened to us,” Mrs. Ice said.

Genetic testing revealed that Renley suffers from a condition known as haploinsufficiency of the PRR-12 gene, which prevents his eyes from developing in the womb.

Experts estimate that only 30 cases have been reported worldwide. “We had a better chance of winning Powerball,” Mrs. Ice said.

“This is an incredibly rare condition,” Dr. Nate Jensen, a geneticist at St. Louis Children’s Hospital, told KFVS 12.

“How patients are affected by it varies; some patients with the same genetic change may have one eye affected. [The eye] It may not exist at all, as in Renly’s case, or it may simply be small. ”

“In this case, both eyes are affected and both are completely gone.”

Dr. Jensen said that although research on PRR-12 is very limited, it can cause intellectual and developmental delays.

Although Mrs. Ice’s pregnancy was normal, her parents may have unknowingly passed on the genetic mutation.

Dr. Jensen estimates that Renly has a 50 percent chance of passing on the condition to her future children.

Experts say the cause of the PRR-12 gene abnormality is unknown, but they believe nothing the Ice family did could have prevented it.

“There was nothing Renley’s mother or father did to cause this,” Dr. Jensen said. “There was nothing I could have done to prevent it. It’s completely random.”

No amount of treatment can restore the eye, so doctors instead focus on giving the baby a prosthesis and allowing him to lead a relatively normal life.

The family has started a GoFundMe to cover the 300-mile round trip from their home in Poplar Bluff to a hospital in St. Louis, as well as medical expenses as Renley grows older.

Later this week, Renley will undergo surgery to unseal his eyelids and place prosthetics in place of his eyes to help his facial structures develop properly.

“It’s like you have the whole world in your hands,” Ice said. “In her long run, we are the ones chosen to help her, and I think we will learn from her.”

The family’s current focus is on helping Renly travel the world without his sight. She sleeps in one of her parents’ shirts every night and is used to her parents’ scent.

“Guys, they learn through sight. They learn by seeing things. So she has to learn how to feel her surroundings and smell her surroundings,” Mrs. Ice said. .

“It’s hard for us to imagine what life would be like if we couldn’t see. If someone stole my vision, I would be devastated.”

“But for her, this is normal.”