Samantha Barlow’s mother, Julie, was the first to see that something was clouding her newborn baby’s beautiful deep blue eyes. When Julie held her daughter for the first time, Barlow looked up at her mother but seemed unable to really meet her adoring gaze.
Julie wouldn’t let it go. A flurry of doctors and specialists whisked baby Samantha away and, just four hours after her birth, Julie’s mother’s intuition was proven right.
Barlow was not only born with glaucoma and cataracts in both eyes, but also inherited an extremely rare and sporadic genetic disorder called Peters anomaly that causes the cornea’s attachment to the iris to gradually waste away.
That was 32 years ago, yet experts still struggle to understand the disorder—why Barlow’s brother and sister never experienced any vision loss or why all three of Barlow’s young daughters now struggle with vision impairments similar to her own.
“It’s almost like there are rain clouds over your eyes making everything really blurry,” Barlow says. “I couldn’t see blades of grass or leaves on trees, just carpets and clouds of solid green.”
She could recognize her family’s faces but struggled to make out individual features. The bright purple paint in her bedroom seemed washed in a muddy, sepia-toned brown.
Then and now, there is really only one solution for correcting her vision: corneal transplants. It’s an already complicated procedure that was still in its infancy when Barlow was born, and her young age coupled with the high rate of bodily rejection made the procedure even more of a longshot.
Julie, however, saw more for her daughter than a lifetime of exclusions and impossibilities. She still followed the doctors’ advice that her baby learn to read Braille and was always fastidious in following through with countless invasive eye exams needed to monitor her condition.
But she also quickly rekindled her friendship with Jason Woody, her former classmate from Tampa’s Chamberlain High School who went on to become president and CEO of the Lion’s Eye Institute for Transplant and Research, a non-profit specializing in cornea donation and transplants.
Barlow’s family became a constant presence at the institute, advocating for its mission and volunteering countless hours while hoping that someone someday would offer the perfect eyes for Samantha to finally see the world in its entirety.
It took nine years, but a match finally came for Barlow’s first transplant. The following year, she had another successful transplant for her other eye.
It isn’t a miracle cure-all. She’ll likely never see well enough to drive a car and she still reads books printed with oversized letters. But she was able to take a cake decorating class with her mother, graduate from college, and read late into the night for her work as a paralegal. She married a man who caught her eye at a Tijuana Flats one day and cried tears of relief when she got her first sonogram and was able to see a little baby instead of a blur.
Most importantly, though, when she looks at her mother’s big brown eyes she can see her looking back. And when Barlow saw her own daughters struggle to do the same, she too knew what to do.
In the years since Barlow’s surgeries, Lion’s Eye has grown to the largest eye bank, tissue recovery and ocular research center in the world, Woody says. And while the team will always work to encourage more people to become organ donors for people like Barlow, educating parents on how to care for their children’s eyes has become an equally important mission.
“We’re all visual learners, but you only know what you see,” Woody says. “How many children go through life being bullied or thinking they’re dumb because they can’t read when really they just have poor vision? The sooner we help kids like Samantha and her girls see the world clearly, what a different world this would be.”
Originally published in the May 2023 issue of Tampa Bay Parenting Magazine.