Kara (Lynch) Ciocca ’93 and Megan (Lynch) Webber ’90 remember the moment like it was yesterday. The sisters, both mothers of three, had just returned from a Disney cruise with their families when Kara realized something was wrong with Megan’s five-year-old son, Ben.
As she looked through vacation photos inside her Kansas City home, Kara noticed a golden glow in Ben’s left eye. At first, she thought nothing of it. Then she saw it again. And again. Worried, she picked up the phone and called her sister in Los Angeles.
“I didn’t think much of it until the fifth or sixth photo, and then it just felt like a ton of bricks hit me,” Kara recalls. “I knew something was terribly wrong with Ben. I called Megan and told her, ‘I’m really worried about Ben.’”
That fateful call led to several medical tests and a diagnosis: Coats’ Disease. The progressive condition causes partial or complete detachment of the retina, eventually leading to loss of vision in the affected eye. For Ben, the diagnosis came early enough that he could receive treatment without needing to have his eye removed. And although he has severe vision loss in his left eye, he doesn’t let it hold him back. Now 15, he enjoys lacrosse and loves to ski.
But if not for his aunt’s concerned call, it could have been much worse, Megan says. And as she and her sister continued to read up on Coats’ Disease, they learned that Leukocoria, the golden eye glow Kara had noticed, can indicate any one of about 20 serious conditions that can cause vision loss or blindness—or even prove fatal.
“We realized how lucky we were that this wasn’t one of these other diseases. And we wondered why in the world we didn’t know that this glow in a photograph is something parents need to be mindful of,” Megan says. “If Kara hadn’t called me and I hadn’t gone in for another year or two, the situation could have been dramatically different.”
That realization led the sisters and two friends to start Know the Glow, a nonprofit that aims to help prevent blindness by giving parents the information they need to get dangerous eye conditions diagnosed and treated in time.
“We really wanted to build awareness so we could help parents identify these conditions earlier and get them to care,” Megan says. “Most of the time it’s parents that are finding these photographs and bringing them to the attention of their doctors, but it’s often not a direct route. Doctors don’t see it as easily because it’s not really visible to the naked eye. You have to be able to show that you’re finding it regularly in photographs. And once you do, 80 percent of the time these diseases are curable or at least treatable, but they all do so much better if you catch them early.”
Because awareness is key, the sisters say, digital tools are crucial for helping parents to get the information they need and to navigate the process of seeing doctors and sometimes getting second opinions. That’s why Know the Glow’s website is chock-full of information and resources, along with stories from families who have dealt with the shock of a serious eye condition diagnosis. And it’s why Kara manages the organization's Facebook page, collecting stories and helping to answer questions from concerned parents who have seen a possible Leukocoria and are looking to connect with a medical professional.
“I try to capture their stories, Kara says. “We have found that sharing stories of families with glow-related conditions to be one of the best ways to spread awareness. I will talk to these families post-diagnosis and try to get their stories posted on our Facebook page and hopefully those will spread like wildfire.”
Awareness is increasing. Megan recalls hearing from a retina specialist she knew who moved from Los Angeles to London. He contacted her when a concerned mother brought her child in after finding Know the Glow online. Others have reached out from a variety of countries, including Israel, New Zealand, and the Philippines. On World Cancer Awareness Day, a woman marching in a parade in Mumbai, India was spotted carrying a “Know the Glow” sign.
“We could not even believe it,” Megan says. “It’s so crazy to see how three little words can change the trajectory for children’s vision halfway across the world.”
As they continue to expand Know the Glow’s reach and raise awareness, the sisters are grateful they can use their family’s own experience to make an impact.
“It’s just an incredible gift for me to be able to talk to these families around the world and realize that at the core, we’re human beings who just want the best for the people we love, and we want our children to be healthy and happy,” Kara says. “There are just incredible stories of parents—we call them superheroes—who fight for their children’s health, and don’t stop until they get an answer that makes sense to them, to get their child to care.”
“There’s something so beautiful about this: children helping children,” she says. “What we love most is once you share a story, people come back and they’ll say ‘I saw that story, and then the next day I looked at my son’s photos and the glow just happened to pop up.’ We have all these crazy glow incidences that keep happening. It’s really what keeps us moving forward, and it reassures us that we are doing what we set out to do, and doing it in such a beautiful way.”