Baby born without eyes due to genetic disorder so rare there’s fewer than 30 known cases worldwide
Robert and Taylor Ice were overjoyed to discover they were expecting a baby after struggling with infertility. However, when their daughter Wrenley was born, they quickly realized that something was amiss. Wrenley did not open her eyes, and upon examination, the pediatrician delivered devastating news: she was born without eyes.
The shocked parents sought answers, traveling over 150 miles to the Children’s Hospital in St. Louis. After several diagnoses, including the absence of eye tissue and sealed eyelids, Dr. Nate Jensen, a geneticist, made a breakthrough. He identified a disorder called haploinsufficiency of PRR12, an extremely rare genetic condition that affects neurodevelopment and causes eye and multisystem abnormalities. In Wrenley’s case, both eyes were completely absent.
Describing the disorder, Dr. Jensen explained, There’s nothing Wrenley’s mother or father did to cause this, there’s nothing either could’ve done to prevent it. It’s totally random.
The Ice family acknowledged the rarity of their situation, with Taylor Ice remarking, I mean we had a better chance of winning the Powerball. However, they regarded Wrenley as their personal lottery win. They believe they were chosen to guide and learn from her unique journey.
While Wrenley’s condition presents challenges, the family remains hopeful. They have set up a GoFundMe campaign to support Wrenley’s medical needs, including surgery to unfuse her eyelids and ensure proper facial structure development. As she grows older, she will also receive glass eyes. The family expressed their optimism that, with the resources, support, and love she receives, Wrenley will thrive and live a fulfilling life.
Despite being born without eyes, Wrenley has known no different, and her parents emphasize that this is her normal. They aim to provide her with the best possible life, filled with opportunities and happiness.
This touching story serves as a reminder of the resilience and unconditional love that exists within families facing extraordinary challenges. The Ice family’s unwavering devotion and determination to support their daughter paints a picture of hope and strength, defying the odds in the face of a rare genetic disorder.
As research continues and medical advancements are made, Wrenley’s story could contribute to further understanding of haploinsufficiency of PRR12 and provide insights into potential treatments or interventions for future cases. In the meantime, the Ice family’s steadfast commitment to their daughter’s well-being serves as an inspiration to others facing similar situations.
The outpouring of support for the family on their GoFundMe page is a testament to the compassion and empathy of individuals worldwide. It showcases the power of collective humanity coming together to make a difference in the lives of those who need it most.
This remarkable journey reminds us all to cherish the gift of life, embrace its challenges, and celebrate the strength and resilience found within each family’s unique story.
