By now, most readers here are familiar with Tyler's story. For those that aren't, the Cliff's Notes version is that he is an 8 year-old Bruin who over the last four years has battled repeated bouts of cancer, endured a bone marrow transplant, and last summer, defied doctors' prognostications by surviving what was thought to be an untreatable obstructive lung disease. All of this he has done while demonstrating an indomitable spirit which has inspired many caring people to embrace him with love and affection, including an overwhelming wave of support from our extended Bruin family.
The latest chapter in Tyler's medical saga began when his vision recently became very blurry and was not entirely correctable with glasses. Because of its sudden onset and Tyler's history, we were initially concerned that Tyler had relapsed in his central nervous system. Fortunately, a biopsy of cerebrospinal fluid and a C/T scan ruled out any relapse. Still there was reason for concern. Ultimately, we were referred to doctors at the Jules Stein Eye Institute at UCLA.
A thorough examination of Tyler's eyes revealed that he had damage to both optic nerves, which is believed to be a very rare (my kid always has to be unique) toxicity from extended use of one of his medications. Discontinuation of the medication was ordered immediately, and the damage appears to have stabilized, if not slightly improved. Still, even with glasses, his vision is no better than 20/60 at this time. With this vision, he can still manage day-to-day activities reasonably well, but unfortunately, it has severely impeded his ability to do one of his favorite things- read books. Many nights, Tyler would go to his bookcase to sample a different book and then start sobbing when he realized that the type was too small/blurry for him to read. I cannot tell you how heartbreaking it was for his mom and me to see such a simple joy be taken away from him.
So yesterday, we met with a low-vision specialist at Jules Stein who examined him and introduced him to a series of devices which could assist his reading. One of them was essentially a sophisticated handheld camera which would magnify any text and display it on a screen in a customized set of enlargements and contrasts (Ty also has some contrast blindness and so the contrast must be intensified for him to see). Tyler's face lit up as soon as he used the device and found himself able to read text that was previously nothing but a blur. It was the first time in months that reading has brought him joy rather than frustration.
The device itself was close to a grand and wasn't covered by insurance, but we knew immediately that it was worth anything to see Tyler excited by reading again. The doctor asked us what our finances were like so that we could construct a personalized payment plan. The truth is that our finances aren't that great these days. I stopped working when Tyler initially relapsed, and my wife hasn't been working since things got really bleak a year ago; and so, we've been living off of savings while our lives slowly progress towards a return to normalcy. Nevertheless, we were prepared to just put the device on our credit cards with his other medical expenses and pay it down as we could. However, upon hearing our story, the doctor looked at us and then looked at Tyler, who was still reading excitedly (a sports page of the paper, actually- tho fortunately, not Simers) and said to us, "Don't worry. My office will pay for it." At first, we could only respond with, "Wait...what?" to which she replied [paraphrasing], "We have donors who support the mission of this center. I can't think of a better cause than this."
Needless to say, my wife and I were floored. And relieved. And oh so grateful. Not just to this doctor and the donors of the Jules Stein Eye Institute, but to each and every person who has been so generous to support Tyler, our family, and people like us who are going through difficult times. It was a great reminder that we still live in a world full of compassionate, kindhearted people, and that many of them can be found at UCLA.
We are very lucky, indeed. Thank you.