On September 1, 2021, our lives got turned upside down. My husband and I were talking in the morning and we both had mentioned that we were seeing a glow or white light in our 18-month-old son’s eye lately. We knew we had a pediatrician appointment for that afternoon and we figured we would bring it up then. As the morning went on and we started to Google the glow, we realized this could be a much bigger problem. We called a few optometrists until someone could see us that day. He referred us immediately to Dr. Shields at Wills Eye Hospital.
Our first appointment was September 7 and our EUA was on September 15, which gave us Stage 4 Coats’ Disease with a total retinal detachment. On September 23, Eli had an enucleation of his eye. September flew by so fast, we barely had time to process what was happening. We had never heard of this disease but we were so thankful for this Foundation to have all the information readily available. Eli is 3 weeks post-op and he is doing AMAZING! He is a fun 19-month-old little boy, always on the move, and trying to keep up with his two older brothers. The enucleation did not slow him down – if anything it probably relieved some pain that we didn’t know was there. We are so grateful for all of the support we have been given from our community during this time. This ordeal was much harder on us as parents than it was on little Eli. He is a true superhero to us!