Miles’ Glow Story

Posted on 2018-10-31

When Miles was about 12 months old, Lauran and Barry started to notice “the Glow” in the flash photos they took of their son. He was a very active, healthy and happy little boy. Lauran and Barry had never heard of “the Glow” and there was no reason to have concern about Mile’s vision so they never gave the persistent Glow much thought.  

When Miles turned two, he went to a routine exam with his pediatrician. During the exam their pediatrician checked the alignment of Miles’ eyes. He discovered that their son had a slight misalignment of his left eye, believed to be strabismus. Lauran was reassured that this was a common condition that could be corrected. They were referred to a pediatric ophthalmologist for further testing and treatment. The appointment was scheduled for three months later.

When Lauran arrived with Miles at the ophthalmologist office, she was not overly concerned. That calm evaporated in an instant when the doctor quickly discovered that Miles had an underlying condition that was causing the misalignment. She could see something behind the eye. Lauran was shocked when the doctor explained that she believed he either had Coats’ Disease or Retinoblastoma, cancer of the eye. To determine which, Miles would need to have an exam under anesthesia.

Barry and Lauran moved into action. Barry immediately started to research the internet. He and Lauran understood the seriousness of Retinoblastoma but had never heard of Coats’ Disease . It was through that research that he discovered the Know The Glow website and learned that “the Glow” they had noticed for over a year in Miles’ photos was actually a silent indication that something dangerous was developing in Miles’ eye.  They simply did not know what they had been looking at.

Reaching out to Know The Glow via email they were connected with Megan Webber, the co-founder, who spoke with them by phone and was able to help answer questions and assured them that they were in excellent hands at Duke.  

They both learned quickly about all of the possible outcomes of both of these dangerous eye diagnoses. The wait for his Exam Under Anesthesia (EUA) was agonizing. Barry and Lauran knew that with the help of the team at Duke they could tackle whatever the cause of Miles’ Glow, they just wanted to know what they were facing so they could start the fight.

Four days later Miles had an EUA administered by Dr. Xi Chen at Duke University Medical Center.  Here they were able to clearly confirm that Miles has Coats’ Disease. He was given his first laser treatment during the sedation.  While Lauran and Barry were very relieved not to be facing cancer they also knew they were now facing a condition that has no cure and no definitive path.

Two weeks later Miles was checked to see the success of the first procedure. Doctors were very pleased with the results as they saw significant improvement. Miles was then scheduled for a second laser treatment which will take place later this month.

Lauran says through all of this Miles has remained active, curious, happy and very busy. He loves to climb and loves anything to do with construction vehicles. He is a very “normal” two year old. She says there were never and still are no outward signs that he has a visual impairment.

Lauran is very grateful to her pediatrician for first noticing something was amiss with Miles’ vision. She wishes that she had been aware of the Glow and knew to act when she first noticed it. Both her and Barry are hoping that by sharing their story they will help others to “Know the Glow” and have their children diagnosed in time.