This Glow Story has two parts today: one told from the unique perspective of Tristan himself and the second in his mom’s words.
Tristan’s Story from His Perspective
I was at Disneyland, believe it or not, for New Year’s in 2015 going into 2016. It was Disneyland so I was enjoying everything so much that I wasn’t worried or paying attention to the little things but on the morning of January 2nd, 2016 when I realized that something was going on with my eye. I didn’t tell anyone until that night because I thought it was just an eyelash and it was a really small blindspot. That night I told my stepmom and father and none of us had any idea of what was happening so we rinsed it out and I went to bed. The next morning when we were packing up to go I was utterly confused because it was now taking up almost all of my central vision! At 12 years old I was so scared I didn’t know what to do. Soon I calmed down, told my dad, and then I blew it off. (PS – Don’t blow it off! Take it seriously!!)
My family didn’t blow it off though. We stopped at an Emergency Room in Southern California and they also had no clue what to do. They sent us to a eye specialist about 20 minutes away and same story – no answers. My mom picked me up from my dad in Phoenix and then made an appointment for me with my amazing doctor, Dr. Rahul Reddy. When I went to the appointment, the staff was very concerned but also very polite. They took lots of pictures of my eye and immediately they took me to get this yellow ink injected into my vein to make it easier to see my eye and they took even deeper eye pictures. Within minutes of the second set of pictures, Dr.Reddy informed me that I have Coats’ Disease. He told me “This is literally a textbook picture/case of Coats’ Disease.” He told me the options and what to expect and right then and there we decided to do laser surgery and seal the leaks or at least most of them. The surgery was very awkward but not painful. It feels quite weird. I went home that weekend because my mom was worried about the pressure change from the elevation.
It’s now been 2 1/2 years since my initial diagnosis and I’ve been getting injections in my left eye every 4-6 weeks since and have also had two more laser surgeries.The biggest thing I’ve learned is not to let it hold you back – to live your life to the fullest. I haven’t stopped playing baseball or football and now I even start varsity on both. I just want everyone that reads this to know that it’s not a disability and in fact it is one of the best thing that’s ever happened to me. I don’t take my vision for granted now and it even gives me that edge to be better than the person next to me but it also helps me remain humble because things can change in an instant.
Sincerely, Tristan W. Burns
Tristan’s Story from His Mom’s Perspective
When my son, Tristan, was traveling home from California with his dad, he messaged me saying he was scared and could not see out of his eye. Never have I felt so helpless! I had to call my ex-husband and insist that he get medical attention immediately! After visiting one urgent care, then an ER somewhere near Palm Springs, Tristan finally ended up at an ophthalmologist, with the vague suggestion that he had fluid behind his eye. I wasn’t hugely reassured so I met Tristan as he entered Phoenix with his father, about 100 miles from our home, in the middle of the night on the freeway.
As luck would have it, I had a friend who worked for a Retinal consultant and she was able to schedule me in the very next day, January 4, 2016. It was during that visit that Dr. Reddy diagnosed Tristan with Coats’ Disease and then completed Tristan’s first laser surgery.
As a mom, I can’t begin to describe the roller coaster of emotions I went through —hoping he would regain vision, researching and realizing that most likely he wouldn’t, and never letting him see my absolute fear about what his future could be.
In March of 2016, Tristan’s father passed away unexpectedly — another huge blow for a 12-year-old boy. We were just accepting our journey as a Coats’ family, and another travesty happened. Now, over two years later, looking back we realize that this journey has made us stronger as a family. I have learned just how resilient a child can be when faced with adversity.
Has this journey been easy? Not at all. His eye had been stable but then just about a year ago it began leaking again which led t Round 2 of laser surgery and more injections. Last month we graduated from monthly injections to injections every six weeks.
My lesson learned — life goes on. My son bravely carried on.
He continued to be involved in Boy Scouts, FFA, and as a Freshman he started playing Varsity Football, managing the basketball team, and playing baseball. Last year he was awarded most improved slugger in baseball. Once, after a coach asked “Hey Burns — are you blind?? Why did you miss that ball in right field?” Tristan replied “Coach, I am in left field and as a matter of fact I am blind in my left eye!” I saw then how a comment that could have had a negative impact on a child only made Tristan laugh and shrug it off.
This year as a Sophomore, he is playing football on offense, defense, and special teams. He is a Life Scout working on his Eagle Scout Plan, is Student Council Class Secretary, and has joined the competition cheer squad to help with stunts! He is preparing to go to Nationals with Future Farmers of America in October. My son has shown me just what one can achieve if they have the right mindset and support.
My advice to other Coats’ Families, whether you are new to Coats’, or have been dealing with it for a while, is don’t hold your child back!
Teach them to advocate for themselves, be sure they have a 504, or IEP in school, and allow them to live as normal a life as possible. When my son was a freshman he had an interest inventory the first week of school from a teacher that asked him what made him unique. His answer, “ I am blind in my left eye.” In that moment I realized that he had fully adjusted to his disability.
I know when he reads this he will say “Mom, I am not disabled , I am unique.”