Ben’s Story

Posted on 2016-04-13

When Megan Webber downloaded her family photos from her digital camera, she found the usual problems that need touching up — some were too dark, some were a little grainy, and some needed a little red-eye removal. Some of the pictures of her 5-year-old son, Benjamin, had a golden glow in his left eye. “Benjamin has always had a freckle in his left eye,” said Megan, “so I thought the flash was just a difference due to the coloring of his eye and ignored it — I even did red-eye correction to remove it from photos.” But when her sister noticed the same glow in some family vacation pictures she had taken, she gave Megan a concerned call. “She said it was probably nothing. But she had seen on a television show that this could be a sign of a tumor in the eye and recommended I have him seen.” Benjamin’s pediatrician found nothing, but he sent them to a specialist who urged them to come in right away. They were stunned to learn he was legally blind in his left eye. Scans of his eye showed a white mass, which had been causing the reflection in the photograph. After testing and a tense few days, they discovered that Benjamin had Coats’ Disease, a life-long disease that can damage the eye to the point where eye removal is necessary. Fortunately, Benjamin’s problem was caught early enough for treatment. “While Benjamin has had three eye surgeries, we were very lucky to have caught his disease in time,” said Megan. “Had it been more advanced Ben could have immediately lost his eye. We are so grateful to Dr. Tom Lee and the doctors at The Vision Center at Children’s Hospital Los Angeles. Without the work that they do so many families would not have access to the quality and caliber of care that is provided there.” Benjamin is doing well, and is a happy, thriving first-grader. “He wears protective Nike shatterproof glasses which the other kids think are pretty cool,” said Megan. “The glasses are primarily to keep his unaffected eye safe, for without that eye he would be blind.” Megan was determined that others learn from her experience, and is the driving force behind the “Know The Glow” campaign. “Had I known about the glow earlier, Dr. Lee could have saved more of Ben’s vision,” said Megan. “Knowing what it felt like to possibly face a fatal outcome and knowing that I ignored such a huge red flag that was right there in front of me, I don’t want another parent to have to suffer through that or another child to needlessly lose their sight or their eyes due to a lack of awareness of the glow!”