Meet Wrenley, a baby girl from Missouri who defied the odds by being born with an incredibly rare genetic condition that affects only 30 people in the world – she was born without eyes.
Image VIA GoFundMe
It was a journey of hope and struggle for her parents, Taylor and Robert Ice, who overcame fertility challenges to finally become pregnant. Throughout Taylor’s pregnancy, doctors assured them that their baby girl was perfectly healthy. However, when Wrenley made her entrance into the world on November 6, 2023, her parents quickly realized something wasn’t right.
Worried about her closed eyes, Taylor asked the nurse about it. The nurse explained that babies often take time to open their eyes because they were used to darkness in the womb. But as days went by, Wrenley never opened her eyes. It was during a pediatrician’s examination that the devastating truth came to light – their daughter had no eyes at all.
The news left Taylor in tears as she struggled to comprehend what this meant for their precious little one. Immediately after giving birth via C-section, the family embarked on a 150-mile journey to St Louis Children’s Hospital in search of answers. It was a whirlwind of diagnoses within diagnoses that left them overwhelmed but determined to find out what caused Wrenley’s condition.
Eventually, doctors identified her condition as anophtalmia – a rare genetic disorder characterized by the absence of eye tissue and an optic nerve responsible for processing visual information in the brain.
Wrenley also lacked cortisol production, a stress hormone produced by adrenal glands. These factors led her eyes to be permanently sealed shut.
The family underwent genetic testing which revealed that Wrenley had haploinsufficiency of the PRR-12 gene, an even rarer condition affecting just 30 reported cases worldwide. The odds seemed impossible; as Taylor put it, they had better chances of winning the Powerball lottery.
Dr. Nate Jensen, a geneticist at St Louis Children’s Hospital, explained that Wrenley’s case was particularly severe as both her eyes were completely absent. He also mentioned the potential for intellectual and developmental delays associated with the PRR-12 gene mutation.
Despite having a normal pregnancy, Taylor and Robert may have unknowingly passed on these gene mutations to their daughter. Dr. Jensen estimated a 50 percent chance of Wrenley passing the condition on to her own future children.
The cause of abnormalities in the PRR-12 gene remains unknown, but experts are certain that it was not the Ice family’s fault in any way. It was simply a random occurrence beyond their control.
Sadly, there is no treatment available to restore Wrenley’s vision. However, doctors are focused on providing her with prosthetics to help her lead as normal a life as possible. The family has started a GoFundMe campaign to cover travel expenses between Poplar Bluff and St Louis, as well as ongoing medical costs for Wrenley.
In an upcoming surgery, Wrenley will have her eyelids unsealed and prosthetics fitted in place of her eyes to aid in normal facial structure development. It’s a challenging journey for the Ice family, but they believe they were chosen to support Wrenley and learn from her along the way.
Their focus now is helping Wrenley adapt to a world without sight. She sleeps each night cuddled in one of her parents’ shirts, familiarizing herself with their scent since she will rely more heavily on touch and smell to understand her surroundings.
While it may be difficult for us to imagine life without vision, this is Wrenley’s normal – and her determined family is committed to embracing it every step of the way.
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