Joey’s Glow Story

Diagnosis: Coats’ Disease

In December 2020, Mike and Pam took their son Joey for his six year well visit.  During the exam, the doctor noticed that Joey may need glasses and sent them to see an ophthalmologist.  Not alarmed by this news, the family waited patiently for two months until they were able to get in for the referral.

The exam started with a simple eye chart.  The doctor first covered Joey’s left eye and told him to read the letters.  Joey responded with “I can’t see”.  Being a bit of a jokester, everyone assumed he was kidding.  The doctor then covered Joey’s right eye and he easily rattled off all the letters from top to bottom.  When the doctor again covered his left Joey once simply answered with “I can’t see.”  Pam was shocked.  She had no idea her son had no vision in this eye.

The ophthalmologist was also concerned and performed a variety of tests and took many scans of Joey’s eye.  Pam said the visit lasted over four hours.  At the end of the day, she was told that Joey’s vision loss was possibly due to Coats’ Disease.  Coats’ Disease is a rare congenital eye disease where the blood vessels behind the retina leak fluid into the eye which collects and causes the retina to detach over time.  While Coats’ is not curable it is treatable.  They were sent to see Dr. Cynthia Toth at Duke University’s Department of Ophthalmology for further evaluation.

Once at Duke, Joey had his first exam. They performed a total evaluation under anesthesia where Coats’ Disease was confirmed.  Joey also received laser and cryogenic therapy to close the vessels in his eye as well as a steroid.  About two weeks after these procedures, Joey was able to have partial visibility in his Coats eye where he can see shapes and shadows.  Joey will be receiving another round of laser eye surgery in August and then will be monitored every six months and treated as needed. 

Through it all, Joey has remained a very active, happy, energetic six year old.  He loves Paw Patrol and Monster Trucks.  His mom says he is always on the go… you would never know he has any visual issues at all. 

Looking back, Mike and Pam have found a few photos where Joey exhibited the Glow.  At the time, they did not know that this was a sign of something more.  They hope by sharing their story that they will educate other parents to look for the Glow in their children’s photos as this may be the only sign that there are any visual concerns.  Children rarely realize they are losing their vision with Coats’ Disease as the change is gradual and the other eye compensates.  It is very often the Glow is the only sign to help inform parents about these types of vision issues.