Our journey with Coats’ Disease began May 2018. I had started noticing my son’s eye would wonder off, so I immediately took him to his pediatrician, and she referred me to an eye doctor. The wait to get into the eye clinic was two months, as were most of the children’s eye clinics where we live. I, however, started noticing something weird with my son’s eye (whom, by the way, was only three years old). When the light hit his eye, it started looking hallow in the middle, which I though was very odd. I just happened to take a picture one day and the flash came out on the picture and that’s when I noticed the glow!
At first, I thought it was just the angle of the camera when it flashed, but it started coming out more and more. I immediately called the eye doctor and demanded a sooner appointment. After a week of fighting for them to get my son a sooner appointment, they finally brought him in.
During the checkup, the first thing the doctor said was “uh oh.” This was the worst thing I could hear as a mother, as I has done the research and I knew it was one of two things – Coats’ Disease or retinoblastoma. After the evaluation, the doctor determined my son had retinoblastoma, this though was not a diagnosis that I was going to take without a second opinion.
I went for the second opinion and that doctor sent us for an MRI. It was determined my son had Coats’ Disease. Our insurance, which again I had to fight with, gave us a referral to go see Dr Emmanuel Chang in Houston, TX. Only then did I truly know how bad it was! My son was already in stage 4b. His retina was completely detached, and Dr Chang immediately scheduled him for surgery! His first surgery was on July 3, 2018, which went very well. We have had checkups ever since with the help of another Retina specialist here in El Paso by the name of Dr Dinesh Bahl. He and Dr Chang have been working very closely with my son’s case together, so we didn’t have to travel to Houston as often as every month. My son, however, has lost complete sight in his left eye and from what we have been told, it is possible it may never come back. The race now is to just save the eye!!
He was doing very well until October 2018, when, at a visit with Dr Chang, we were told his retina was detaching again and there was fluid once again. My son had his second surgery, where this time they did a sclera buckle. It was painful for him this time around.
Uriel has his last surgery on May 24, 2019. At his follow-up appointment in November, we received confirmation that his eye is currently stable. Coats’ Disease has, unfortunately, left him completely blind is left eye, but I am just happy that, as of now, he’s stable and the follow-up appointments have become every six months instead of every month.
I thank Dr. Chang for everything he has done for Uriel and how quickly he responds back to any questions we may have. I truly hope one day we will find a cure for this disease.