“I remember the drive into the hospital’s front circle … seeing helicopters overhead and young children in wheelchairs. As a mom, you know you’re walking in with one view of the world, but could be walking out with a totally different one depending on what they’re going to tell you.”
It’s a moment that many, if not all of us, have experienced at some point in our lives – the moment we realize how fragile life is. For Megan Webber, the Co-Founder of Know The Glow, the day she took her five-year-old son Ben to Children’s Hospital Los Angeles was one of those moments. It launched the family on a trajectory that changed their lives forever, and also the lives of hundreds of other children and their families.
For the Webbers, everything changed within hours. Megan had brushed off the yellow glow in photos of her son until her sister pointed it out in the photos she’d taken, mentioning that she had seen on television that a “cat’s-eye” reflection could be a sign of cancer.
Maternal instinct kicked in, and Megan spent hours on Google, hunting for any information she could find. There wasn’t much, but what she did find wasn’t good – Retinoblastoma, a potentially blinding and even deadly cancer of the retina, kept coming up in her searches. “I’m probably just a paranoid mom,” she told the pediatrician the next day while showing him the photos, “But here’s what I’ve found … just please check this out.” The pediatrician didn’t see anything and didn’t seem overly concerned, but referred them to a pediatric ophthalmologist just in case, requesting an appointment in a week.
Megan called the next morning and left the ophthalmologist a voicemail before dropping Ben off at kindergarten. They called back as she was driving home. “The hair just went up on the back of my neck when they said they needed to see Ben right away,” Megan said. In full panic mode now, “I could barely even write down the doctor’s address. I had to call my husband and have him pick up Ben from his school. Within an hour we were at the ophthalmologist office.”
The ophthalmologist found a large white mass behind Ben’s left eye, the reason for that glow in photos. Believing it to be Retinoblastoma, he referred Ben directly to Children’s Hospital Los Angeles, and Megan, her husband, and Ben drove straight there.
“We were just in shock,” Megan remembers of that drive to the hospital. Inside, the doctors were waiting for them. They explained that they believed Ben was either suffering from Retinoblastoma or Coats’ Disease, a disease of the blood vessels of the eye which can lead to removal of the eye if not caught in time. It would be four days before they could get Ben into the operating room to find out for sure the nature of the mass.
“It was torture,” Megan said, “and yet it was amazing to have these incredible doctors answer our questions and support us each step of the way. This is when we started realizing how hard it was to find any information on the glow and to know what to do, and we felt really blessed to be where we were.”
This wasn’t the first medical crisis Megan and her family had faced, and mentally she prepared to fold this into their family’s reality.
The day of the procedure finally came. “That time in the waiting room seemed like forever,” Megan recalls. “I’ll never forget the moment the nurse came out to get us – she had a big smile on her face, and I knew we were going to be okay.”
The diagnosis came back as Coats’ Disease, and while Ben’s sight in his left eye was irreparably damaged, the Webbers felt blessed. Ben underwent three surgeries over the next several years. Many people would have focused on just getting through and finding a new normal for their own family; Megan isn’t one of those people.
“We’d seen so many other families going through this, and dealing with the devastation of retinoblastoma, and we knew that they weren’t equipped to wave a flag and raise awareness the way we were, to let other people know, this could be prevented,” Megan said. “My oldest son has epilepsy, and watching how he uses it as a guide to bring hope to others taught me that you can take something that happens to you that’s negative, and turn it into something positive.”
She started by serving on the board of the Vision Center at Children’s Hospital, and then decided to share her family’s story and raise money for new medical equipment. Friends were equally surprised to learn that this glow could be an indicator of so many potentially devastating eye diseases and disorders. Two of Megan’s closes friends, Lannette Turicchi and Sandra Roderick, realized that they were uniquely gifted with the resources and the network to make an even bigger impact, and Know The Glow was born.
“In the beginning our goal was to help one child, then if we did that, we’d done our part and we’d be done,” Megan explained. “But then we saw all these families going through what we did, or worse, and we just felt we needed to do everything we could to make the path easier and straighter for those following us.”
“Anytime we start feeling like we’re just seven or eight moms doing this on the side … how much can we really do? Then people call us and thank us for saving their child’s sight, or people reach out to us because they want to start a Know the Glow chapter in Italy or Spain. One woman even sent us pictures of a tattoo she placed on her arm with the Know The Glow logo. It’s really been amazing.” Megan said. “It keeps us going, and we know we are right where we’re supposed to be.”
“For me, it’s been a big life lesson that what matters is what you do for others,” she continued. “Making the path easier for others is its own reward and in sharing the stories of the children we find we watch how that leads to finding even more at-risk children.”
“I’m always amazed by the mothers we hear from – they’re the strongest moms we’ve ever met,” Megan said. “God really knows what he’s doing placing these children in their arms, because they’ll go to the ends of the earth for their children. We just want them to know there are resources out there – there is help out there – and we will do all we can to help them through.”