James’s Vision: An Update
I wanted to take a moment to update you all on James. At the end of March, he had two appointments with an ophthalmologist at Duke Eye Center to check on his retina thickness. Unfortunately, the results showed that his retinas are thinning even more rapidly than we had anticipated.
Right now, his right eye retina measures at 1.28, and his left eye at 1.21 (forgive me, as I’m not entirely sure of the unit of measurement). Just in January, his left eye retina was at 1.36 and his right at 1.45. Seeing this much decline in such a short time was shocking—not just for us, but for his doctor as well. He shared that this level of progression is typically seen in a 7-year-old with Batten disease, making James’s case even more concerning.
As of now, James still has both central and peripheral vision, but parts of his vision are already blurred. Based on the rate of thinning, his doctor estimates that within six months to a year, he will be considered blind. While he won’t experience total darkness, his world will become increasingly blurred—making it harder for him to navigate daily life.
This is incredibly difficult news for us to process, and we are doing everything we can to cherish the time he has left with his vision while preparing for what’s ahead.
We are endlessly grateful for the love, support, and prayers from those who continue to walk this journey with us. With this in mind, we are making the most of the time he has left with his vision. We plan to take him to the beach more often so he can enjoy the sand, playing in the beach house, and sitting on the porch while watching the garbage trucks pick up our trash cans on Mondays—one of his favorite things to do. And we are beyond excited to share that our Make-A-Wish trip has finally been granted! In May, we will be heading to Texas to visit the Peterbilt headquarters and the BNSF train yard—two of James’s absolute favorite things. This opportunity means the world to us, and we can’t wait to see the joy on his face.
But first, we have a busy month ahead. We’re heading to Baltimore for his six-month checkup at Kennedy Krieger, a Batten disease institute, and then we’ll be heading back to UNC for their first-ever Batten clinic. It’s a lot, but we’re grateful for the care and support James is receiving.
Please keep James in your thoughts as we navigate these challenges. Your encouragement means more than you know.
Please check out the updated gallery for more recent pictures of James!