Like most parents, Gisele Fetterman frequently snaps photos of her three children. While her sons’ eyes always looked red, daughter Grace had a gold glowing eye. In picture after picture, Grace had one red eye and one yellow eye.
Worried, Fetterman took Grace to the doctor. Her instincts about “the glow” helped saved her daughter’s vision. Fetterman is now speaking out about Grace's ordeal in the hopes of helping other families.
“We may be able to diagnose or at least bring attention to something so that it can be remedied early,” Fetterman, who is married to Pennsylvania Lt. Gov. John Fetterman, told TODAY.
'Know the Glow' campaign
Grace was in kindergarten about three years ago when Fetterman first noticed the change in the girl's eyes.
“For the first several photos I saw I didn't think anything of it,” Fetterman said. “Then I noticed that it was in every single photo. It was too consistent to be a fluke.”
Fetterman knew that blood vessels in the eye caused red eyes in pictures so she first thought maybe Grace had a “low blood cell count.” But a quick internet search made her realize the glowing eye was serious.
“The results were like it could be cancer, it could be a tumor — nothing that I was expecting,” Fetterman said.
An eye doctor diagnosed Grace with Coats disease, a rare non-hereditary disorder that causes abnormal blood vessel development in the retina. Left untreated it can cause retinal detachment, glaucoma, cataracts and vision loss, according to the National Institutes of Health. Children with it have few symptoms so they often go undiagnosed.
Signs include:
- Crossed eyes
- White mass in the pupil behind the lens, also called leukocoria
- Vision loss
Thanks to Fetterman’s quick action, Grace received treatment before any serious damage occurred.
“They were able to save her eyesight,” she said. “The doctors were all really impressed that I was able to catch it … A lot of these cases are preventable, but aren’t caught.”
What are signs of an eye disorder?
Too often, children don’t realize they have vision problems and parents don’t notice any symptoms.
That’s why the long-running awareness campaign called Know the Glow is so important, said Megan Webber, founder of the nonprofit. The website and social media sites give families a place share their stories and help others feel less alone.
Webber remembers when her son, Benjamin, was younger, she saw his glowing eye in photos. She simply edited it out without thinking much about it.
“I literally was correcting it with Photoshop,” she told TODAY. “I was not aware that it could be something wrong.”
After her sister mentioned that a glowing eye could be a sign of cancer, Webber took Benjamin to the doctor. They learned he had Coats disease but he wasn’t as lucky as Grace.
“He's lost most of the vision in his left eye,” Webber explained. “This crazy glow was the only indication that there was something going on.”
Both Grace and Benjamin, who is now a happy healthy teen, had Coats disease, but a glow can be a sign of as many as 20 eye disorders, including:
- Retinoblastoma, a pediatric eye cancer
- Being cross-eyed
- Parasitic eye infection
- Eye trauma
- Various tumors
- Retinal detachment
- PHPV, a congenital disease of the vitreous part of eye
Many of these conditions can be harmless if caught and treated early. When Webber learned that recognizing the gold light in the eye could save children’s vision she wanted to spread the word.
“The glow can be an indicator of the many different vision challenges and disorders,” she said. “You can help prevent these kids from losing their vision.”
In Grace’s case, spotting the glow early made the treatment for Coats relatively painless: She needed to wear glasses for a short time to improve her sight. Originally, doctors thought she'd need glasses until she was 10, but now 9-year-old Grace is enjoying life without specs.
“We were able to strengthen her eye,” Fetterman said “It was almost like the retina was detached and had stopped working.”
Even at her age, Grace realizes how lucky she is.
“She is aware that she could have lost the use of one eye,” Fetterman said. “She's an artist and loves to draw and is grateful to have both eyes working.”
Grace's father, Pennsylvania Lt. Gov. John Fetterman recently shared the family's experience in a series of tweets, noting that the girl just got a "clean bill of health."
"Take a picture. Check. This is *not* “red eye” in pictures. Know the Glow," he tweeted.