Nurul and Rifqi live in Jakarta in beautiful Indonesia. Nurul says her son Rifqi was a very active, creative and inquisitive little boy. Growing up in Indonesia, Rifqi loved to spend his time playing video games, drawing anime and creating his own superhero costumes for play. Nurul says there were no signs of any visual issues.
That all changed when Rifqi was six years old. After a day of playing games and watching anime, Rifqi created a mask for himself to mimic a favorite character. This mask completely covered his left eye. Right away Rifqi felt something was wrong. He told his mother that, with his left eye covered, the vision in his right eye looked “shattered”, like a broken glass. Nurul did not give his concerns much attention as she felt her son must be playing too many video games. She believed that his vision was strained from too much screen time.
During the next few years Rifqi says he never felt any pain in his eye. He never thought again about how the vision was different in his right eye, as when it was not covered he felt he could see completely fine. It would be six years later before they would discover that the “shattered” vision Rifqi described was something more.
Rifqi was on a camping trip with his school. In the middle of the night he says it felt like bugs were in his eye. He began rubbing his eye and it became very watery and red. Rifqi says the pain became extreme, more than he had ever felt before. His vision was completely blurred in that eye. The next day he told his Grandmother about his issues. She was very concerned and took him to the closest hospital. The doctor there told him that there was a problem with his retina and that they needed to see a specialist.
The family soon found Dr. Anggun at Aini Eye Hospital. It did not take very long during Rifqi’s examination for Dr. Anggun to diagnose him with Coats’ Disease. Coats’ Disease is a rare, incurable condition where the vessels behind the eye release fluid. This fluid creates pressure behind the eye that can be very painful and can cause the retina to detach. Although not curable, Coats’ is treatable. And soon after diagnosis, Rifqi had surgery to cauterize the leaking vessels behind his eye. He was also treated at this time with Cryo-therapy.
For months after his surgery, Rifqi was treated with eye drops and also patched the non-Coats eye hoping for the retina to reattach and improve the limited vision he had. Rifqi said he was still in some pain during these months. After three months there was no change in his vision, and the patching regiment was stopped.
Nurul decided to take Rifqi to what is considered to be one of the best hospitals in their area, Cicendo Eye Hospital in Bandung, Indonesia. Here they met with Dr. Erwin Iskandar. Dr. Iskandar started him with Avastin injection therapy. His pain has since subsided. It was also discovered at this time that Rifqi has a cataract in his right eye. For now, his Coats’ is under control and they are watching the cataract for any change. Rifqi is no longer in any pain. He wears glasses to help with his vision.
Rifqi is now 15. He is still very interested in the visual arts and wants to be a designer. He loves exercising and bodybuilding. He finds these interests to help with the isolation he has experienced this past year with Covid-19 and to help him feel empowered after all that he’s experienced.
Looking back, Nurul says she found a photo of Rifqi when he was just seven years old that clearly shows the Glow. She simply did not know that this Glow was a sign of so much more that was slowly developing with his vision. She wishes she had known about the Glow earlier so that she could possibly have saved some of Rifqi’s vision. She is determined to share their story in the hopes of educating other families of the Glow and possibly saving another child’s vision, or life!