Glow of the Month: Norrie Disease

Posted on 2019-03-12

Know The Glow is dedicated to saving children’s eye sight, one photograph at a time!

“The Glow” is a yellow-white reflection that can appear in photographs of a child’s pupils. This “Glow” could potentially be a sign that there is something wrong with the child’s eyes. In fact, over 20 different eye conditions and diseases are connected with “the Glow.” Know The Glow wants parents to be aware of this potential symptom. If you see it once, be alert! If you see it twice, be active!

One of the ways Know The Glow advocates and empowers parents is through our educational blog series titled “Glow of the Month.” We’ve already featured Retinoblastoma and Persistent Fetal Vasculature and we encourage you to keep checking back in as we continue this series.

March’s “Glow of the Month” is Norrie Disease.

Norrie Disease is a genetic disease that manifests only in boys. The main symptom is retinal degeneration which means that boys born with Norrie Disease are either born without sight or lose their sight quickly after birth. In addition to flashing “the Glow” in the child’s pupils, other symptoms associated with Norrie Disease include hearing loss, behavioral problems, and intellectual disability.

One of our members of the Know The Glow community has bravely faced this disease. Cameron was only eight-weeks-old when he was diagnosed with Norrie Disease. Because of the disease’s many symptoms, it was at first a heavy burden for his mom, who struggled watching him suffer. But Cameron’s ability to love “stitched” back together her shattered heart. She writes movingly about life with Cameron and Norrie Disease:

He reshaped my heart and stitched it back together again piece by piece. I don’t know why this happened to me, but I’ve realized it could happen to anyone. It’s just a part of life. It’s not a curse or a burden. It really was a blessing in disguise.

To watch someone smile from pure emotion is the best feeling in the world. He [Cameron] doesn’t know what a smile looks like. It’s not something he learned to copy. It’s a feeling from deep down inside, spreading across your face, becoming infectious!

Cameron is a true little superhero who has continued to spread joy with his smile! Thank you for being part of the Know The Glow family!

If you or your family has experience with “the Glow” or any of the diseases associated with “the Glow” we would love to hear your story! Please contact info@knowtheglow.org.