Megan Webber noticed something strange. An odd white glow appeared in the left eye of her son Benjamin in many photos.
“It wasn’t in every photo. It was so random, but often enough that it made me think,” said Webber. She wrote it off and kept it in the back of her mind, yet she often found herself trying to fix photos of Benjamin using red-eye correction.
A family vacation changed everything when photos taken by Webber’s sister showed the glow in Benjamin’s eye in every single photo, day or night. Her sister remembered hearing that a glow could be a sign of a tumor in the eye and said it would ease her mind if Megan would get Benjamin checked.
The only information Webber could find at the time on the internet was about retinoblastoma, a cancer of the eye. “I started to panic, thinking here I am with one sign I had that something was wrong and I have been literally erasing and ignoring it,” said Webber.
An ophthalmologist visit led to a trip to Children’s Hospital Los Angeles (CHLA), where Benjamin was diagnosed with Coates’ Disease, a build-up of fluid at the back of the eye. It is a disease which, if not caught in time, can lead to removal of the eye. Benjamin’s case was caught in time to save his eye, though his vision in that eye was damaged.
“When you take a photograph of anyone, especially at night, that light is flooding the back of the eye and reflecting back the healthy red blood vessels. That’s why you get red eye reflection,” explained Webber. “But if there is something in the eye, like an occlusion or a tumor or, in Benjamin’s case, a sack of fluid that was developing, that’s what will reflect back instead of the healthy eye.”
That white glow Webber saw in her son’s eye, known as leukocoria, can be an indicator of 15 different eye diseases or disorders, according to the website of the organization Webber founded with two friends, Lannette Turicchi and Sandra Roderick. KnowTheGlow.org is dedicated to increasing awareness so children who exhibit the warning eye glow can be identified early and steps can be taken to prevent vision loss, eye removal or even death. The glow is usually spotted by parents and family members, so the main focus of Know the Glow is to make families aware of what to look for and what to do.
Many times the glow shows up in holiday photos. Alex Muñoz took Halloween photos of her then 15-month-old son Jaden in 2005.
“I was looking through the photos and I see this white glow in his eye. It was in about six of the photos,” Muñoz said. In a panic she called her pediatrician and was told it was probably nothing. Jaden was getting over the flu, so maybe that was it. Muñoz found herself in her kitchen staring into Jaden’s eyes while her mother told her she was being crazy.
“I knew something was wrong with my son,” said Muñoz. An optometrist confirmed her suspicions and sent Muñoz to her pediatrician for an ophthalmologist referral. The ophthalmologist flatly stated, “Your son has cancer and it probably has already spread to his brain.”
A visit to Dr. A. Linn Murphree, the co-director of the Retinoblastoma Program at CHLA, confirmed that Jaden had retinoblastoma. The only solution was to remove the eye.
Surgery was successful and Jaden was out of the hospital and rambunctious the very next day. His mom, however, was struggling. “He’s my firstborn, I thought I did everything right. We took classes, we read through books — how come we never heard of retinoblastoma? What did we miss?”
Webber finds it is often the parents identifying the glow and bringing it to their pediatrician’s attention rather than the doctor noticing it. “You can’t see it with the naked eye and pediatricians don’t typically dilate children’s eyes during wellness checks and do the red reflect test,” said Webber.
The mission of Know the Glow was born — education and awareness.
“We don’t raise research funds. Everything we raise gets poured into furthering awareness,” said Webber. “We’ve partnered with Retinoblastoma International to provide us with a grant to translate our materials into Spanish and create a target program to educate the Latino community in Los Angeles.’”
“The campaign has such amazing success once we get the message out, because the visual images are easy to spot once you know what you are looking for, and they are pretty memorable,” Webber said. Their website’s gallery page highlights many children’s photos and stories, including Jaden and Benjamin. Families from around the world reach out to Know the Glow, asking questions, sending photos and sharing stories.
Their hope is that the paths taken by these highlighted children can help shorten the path for other children. Time is crucial. Oftentimes, Webber said, families are told by their pediatrician not to worry and to come back in six months. Six months later they find that it is cancer, and it has spread.
“After Jaden was diagnosed his pediatrician started to do the dilation of the eye in her office, so that was something that was good that came out this,” said Muñoz. Jaden is now a healthy 13-year-old junior high student who, despite his prosthetic eye, plays football, basketball and is a starting pitcher on his baseball team.
His mother Alex carries pamphlets and works at educating other mothers.
“I just want people to know. I wish I had known. They asked me to share his story. I want people to know about him,” Muñoz said. She spoke of the joy of hearing another mother tell her, “You gave me hope with what your son is doing. You gave me hope for my daughter.”
The Know the Glow website states that 1 in 80 children may show the glow before age nine. “That’s a huge percentage, especially because so much of it is so treatable if you catch it early,” said Webber. “Fortunately, in the U.S. if you are diagnosed (typically between the ages of 0-5) you can be attended to and 90 percent of kids in America, once treated, survive and go on to live long lives,” said Webber. Sadly, survival numbers are bleaker in many other parts of the world.
“It’s just been a great gift to be a part of it all, but there’s still so much more to be done and it’s all just about building awareness. Our mantra has always been, ‘If you see it once, be alert. If you see it twice and in the same eye, then be active,’” said Webber.