Michael was born in Illinois in 2008 with numerous developmental delays. He was a healthy toddler and although he had always struggled with coordination, his pediatrician performed basic eye exams frequently and found nothing to be of concerning, Michael would eventually grow out of the clumsy stage, but little did anyone know that his lack of coordination was the result of what he would soon be diagnosed with.
In 2015, at the age of six, Michael entered first grade. What we didn’t know was everything was about to drastically change for him. In April of 2015, his elementary school had performed a eye exam that showed abnormal findings. This led me to take him to America’s Best for a complete exam by a optometrist.
We were informed that they were concerned it could possibly be Retinoblastoma, a type of cancer that develops behind the eye. However, we would need to be seen by a Optometrist who specialized in this and we were referred by his pediatrician to the Illinois Eye and Ear Infirmary. This brought new difficulties, as this was a walk-in basis and we weren’t guaranteed to be seen. After the second time of waiting all day only to be told to come back and try tomorrow, I grew extremely frustrated. Michael had already been diagnosed with severe ADHD and, at six years old, he didn’t have any more patience left in him to be able to sit another entire day and, frankly, neither did I. I just wanted answers as to what was going on with my son. I expressed my concerns and his pediatricians office who then referred us to Premier Eye Care & Surgery in Buffalo Grove where they were convinced it wasn’t Retinoblastoma but in fact Coats’ Disease. The specialty center then referred us back down to UIC with an appointment to see the Assistant Professor of Ophthalmology, Dr. Felix Y. Chau, MD, who was familiar with the disease.
On April 27, 2015, Michael was seen at the Retina Clinic where it was determined he had chronic retinal detachment in his right eye, rendering him completely blind (no light perception). The next step was examination under general anesthesia (EUA). On April 30, 2015, Michael under went general anesthesia for the exam, which consisted of a multitude of diagnostics and procedures including attempting to freeze the vessels that were leaking into the back of his retina. I still remember like yesterday the painful cries after the procedure, as Michael was in such discomfort and pain. After all this I was left with few answers and so many questions. We received the diagnosis of stage 4 Coats’ Disease and a recommendation for a surgery to correct a Cataract that had developed in his right eye. Sadly for my son, we were told nothing more could be done other than closely monitor the progression of the disease and keep him comfortable.
Determined to find answers I came across the Jack McGovern Coats’ Disease Foundation where, with a little research, I was lucky enough to find The Kovach Eye Institute. On April 7, 2017, Michael, age eight, underwent laser surgery to correct his cataract that stemmed from Coats’ Disease. The pain this innocent little boy yet again had to endure after this procedure is something no one, let alone a child, should have to experience. Michael’s last procedure was in 2017 for the correction of the cataract, however, now in the final stage of Coats’ Disease, he still has his yearly monitoring exam’s at the Kovach Eye Institute.
Despite the circumstances he has endured and continues to endure, he remains the most humorous, positive, and big-hearted kid. Michael is now 13 years old and has started his Freshman year of high school. He is excited for his new adventures that are to come!