Written by Tyson Harper – JMCDF Board Member and Ashley’s dad – we hope this story brings your strength and courage to continue to fight Coats Disease.
When Ashley was about 2 years old, we started to notice that he might be having issues with his eyes. Ashley’s mom would play peek-a-boo with him in the morning and one morning noticed something seemed off, as if he was staring through her. She also noticed that one eye would wander despite Ashley’s focus on the game. We hoped that it was nothing, but seemed to become more obvious over the course of the next few days. We were concerned enough that we began to look for an optometrist that might be able to shed some light on what was happening. We brought Ashley to three different eye doctors, but most of them didn’t seemed to think anything was wrong, and Ashley wasn’t old enough to really articulate his point of view or explain what he was seeing. But at the last appointment, the doctor saw something of concern, and he shared that he thought there was a chance that Ashley had Retinoblastoma (or eye cancer). As you can imagine, we were devastated. Within minutes, he had a next day appointment for us to see Dr. Jumper of West Coast Retina. Looking back, I feel very lucky that we were able to find Dr. Jumper so early in the process. After a brief examination, Dr. Jumper informed us that he would need to put Ashley under general anesthetics so that he could thoroughly examine the eye. Once the procedure was performed, Dr. Jumper confidently informed us that Ashley did not have cancer but he did have a very-advanced, rare eye condition called Coats’ Disease. We quickly learned from Dr. Jumper that this was a very rare disease that the medical community knew very little about (only a handful of doctors were even familiar with treating Coats’ patients). There was no cure and most of the treatments, many of which were still experimental, were only designed to contain the damage and would not cure the disease. This was all very disheartening news to a family that was looking for answers and comfort. Worse yet, there were very few sources of information on this disease at all. The only good news at that point was that we learned that Dr. Jumper was one of the preeminent and leading physicians when it came to this rare disease. In addition, he also pointed us to Tina and Ed McGovern and the Jack McGovern Coats Disease foundation as he knew we would be struggling with understanding this disease.
Despite Ashley’s age, he had a very advanced condition and that his retina was already half detached from the eye due to pressure and fluid build-up in the eye. Without advanced forms of treatment, it was likely that Ashley’s retinal would fully detach and the removal of the eye would be necessary. Dr. Jumper also shared that he had very real concerns over Ashley’s cognitive development as the brain would struggle trying to take input from one perfectly functioning eye and one with Coats’ disease, and could potentially “shut off” any input from the affected eye. No parent wants to hear this, and the fact that there weren’t any solutions only made it worse.
We needed to act fast and Dr. Jumper recommended a series of surgeries to treat the eye that would take place over the course of the next 12 months. Ashley was really too young to know what was going, but he’d soon learn what it was like to visit a hospital frequently. The surgeries ended up being 6 in total, one every 2 months. The surgeries consisted of a series of laser treatments to cauterize the blood vessels and then injecting an experimental drug directly into the eye. The entire surgery experience was so painful and gut-wrenching. Ashley couldn’t eat or drink anything that morning but he didn’t really understand why so it would usually end up in a screaming tantrum. Then, we’d all get prepped for the surgery room and it didn’t take long for Ashley to correlate this activity with something bad. The screaming would get worse. Then we would go into the surgery room and wait until the gas would make him go to sleep. All the while, he would have to be restrained because he was fighting it the entire way. He was so scared and nothing we did would comfort him. My wife and I always wondered what he was thinking as the people who trusted him most were letting this happen to him. The waiting room was always the worst part. You would just sit and wait helplessly, praying that you picked the right doctors, wondering if the treatment would work or whether we would need to remove the eye. Even when it was over, you knew it would be a few weeks and you’d be doing it all over again.
Well, we all made it through the surgeries, and thanks to Dr. Jumper, we were able to stabilize the retina, save Ashley’s eye and restore the eye to a healthy condition. It wasn’t an easy process, but it worked. Even though the eye is healthy, Ashley still can’t see out of it. Ashley is now 7 years old and still needs to see Dr. Jumper twice a year to ensure the condition of the eye hasn’t regressed. Coats’ Disease has been an obstacle in his life that he has learned to cope with, but he refuses to consider it a disability. He is strong, positive and resilient. To protect his good eye, Ashley wears protective glasses at school and sports goggles during physical activities. Although he plays sports, he does struggle at activities that require depth perception. We are grateful for what Dr. Jumper and the Jack McGovern Coats Disease Foundation have given to us; namely, comfort and hope. We are grateful that Ashley was one of the lucky ones, he didn’t lose his eye. Better yet, with the work of Dr. Jumper and JMCDF, we’ve never had great hope that one day will be able to find a cure to Coats’ and Ashley will be able to see the world as the rest of us do!