Brody's Vision
Our 12-year old son Brody, "Toad", began telling us his vision seemed blurry in December 2019. He would sit and watch TV squinting, constantly tearing up. We suspected dry eyes, allergies and/or poor vision, so we had him checked out by an eye doctor.
At his appointment, Brody was not able to make out a 4-inch “E” unless it was less than 6-feet from him. After some other tests; he was diagnosed with a rare and progressive disease known as Keratoconus .
Keratoconus is an eye disease in which the cornea (our eye's clear, protective outer layer) weakens and thins over time, causing the development of a cone-like bulge and optical irregularity of the cornea. Keratoconus can result in significant visual loss and may lead to corneal transplant in severe cases. The disease was much worse in Brody's left eye, causing the now apparent severe vision loss. His right eye, while also afflicted by the disease, was greatly compensating. Due to the severity, we were told to follow up with a cornea specialist who works with children Brody's age to discuss options.
We were able to schedule an appointment with a cornea specialist in Littleton (4-hours away) in early February. Brody had another battery of eye tests completed before we met with the Cornea Specialist. The doctor explained our options; cornea transplants or a new experimental procedure called corneal cross-linking. Corneal cross linking involves infusing the cornea with riboflavin, vitamin B-12, and ultraviolet light. This procedure has been used in Europe for almost 20-years, effectively stopping the disease process.
The goal of the cross-linking procedure is stiffen the cornea, and hopefully stop further progression of the disease. Then they would fit Brody with a scleral contact lens; correcting the shape and protecting his cornea, while providing improved, functional vision in that eye. A scleral lens fits over the entire eye, including the sclera or white part of the eye. We were told, this can be a difficult adjustment for even the most seasoned contact lens wearer, let alone a 12-year-old with little pain tolerance. The right eye, if treated with cross-linking, would not need further intervention at this time. The doctor added that without the cross-linking, the disease would most certainly progress, leading to further blindness, and inevitably require Brody to undergo cornea transplant(s).
So the plan would be; go home, wait for the cornea clinic to acquire FDA approval for the experimental cross-linking treatment. In the meantime Brody would be fitted for a scleral lens. As soon as they attained approval we would be contacted to schedule the procedure. Enter COVID-19, social-distancing, travel restrictions, stay-at-home orders and the closing of the Specialist’s clinic, putting all plans at a frustrating standstill.
Fast forward to the first week in June 2020. We received a call from the Specialist, the procedure was approved by the FDA and we can schedule Brody to undergo the corneal cross-linking procedure. The first openings would be later in July. The recommendation is that we plan to stay at least a couple of days because the procedure begins early in the morning and is an all-day process, with a follow up appointment the day after. Brody will then return for a two-week follow up appointment and then have monthly follow up visits for a year to monitor his progress. The fitting of the scleral lens will require traveling back and forth every two-weeks until the best fit is achieved.
Then came the series of throat punches. We were told that the procedure cost $6,000 for both eyes. They explained that because the procedure is experimental, it is NOT covered by insurance and that we should expect to pay about an additional $1,000+ for the scleral lens and fitting. They apologized, stating that the clinic will not accept payments. None of these crazy numbers include travel expenses.
While we could likely save the money for his treatment over time, his vision would very likely deteriorate requiring even more expense and suffering. We are going to schedule the procedure and pray that things work out. 
Brody turns 13 at the end of July. He is going into the seventh grade. He enjoys BMXing, playing the trumpet, collecting/solving Rubik's cubes, and monitoring the weather. He loves doing tough workouts with his Mom and hanging out in the woodshop with his dad. He has aspirations of becoming a Meteorologist or managing his sister's Pop stardom. Brody has a tenacious spirit for trying new things. He loves his "Bug-Pug".
Brody has struggled in school this past year, due to his poor eyesight. He would love to gain his eyesight back. If you can spare any amount to help our happy-go-lucky, witty, talented and very caring 12-year old son. Our family will be forever grateful.
Thank you so very much for all your kindness and support. Brody would love to send out personal thank you cards to all donors, if you would like one, please message us your address.