James Update: Another Step in His Fight
James is still doing well. His team of doctors continues to amaze us with their dedication and fight. At the end of April, James began a new procedure alongside his regular infusions: ocular injections to help slow the progression of blindness caused by Batten disease. It’s a bit too soon to know if they’re working, but we’re giving it a try.
This procedure is considered “off-label,” and only a very small number of children in the U.S. have undergone it. We hope it can slow the progression of vision loss, but it can’t stop it completely. James will receive the injections once a month (every other infusion) under anesthesia with propofol. Right now, he is legally blind but still has some remaining vision.
His little body continues to impress us with how it adapts. If we hadn’t gone to the retina specialist at Duke Eye Center, we wouldn’t have even known how bad his vision had gotten. We are so grateful to have this opportunity to preserve what vision he still has. The conversation we had with his doctors was both hopeful and heartbreaking—one no parent should ever have to endure.
We know the end game of Batten disease. We know blindness is coming. But we also know that if we don’t try, we gain nothing. We owe it to James to give him the best fighting chance we possibly can. Even if that means traveling to Chapel Hill three weeks out of every month now.
Yep, three weeks. One week for his standard Wednesday–Friday infusions. The following week for a Wednesday–Thursday ophthalmologist follow up after ocular injections. And then we’re back again the next week for the next infusion. We’re only home one whole week out of a month now. It’s a lot of back-and-forth, especially for such a little guy.
There are days I’ve thought about moving closer to Chapel Hill, but this is James’s home—his places, people, routines. Plus, all of my doctors are in Charlotte. I’ve even considered renting an apartment, but that adds up fast. Thankfully, we have the incredible support of the Ronald McDonald House in Chapel Hill (RMHC), which has been such a blessing for us. Here he is the morning of his first injection!
If you're looking for somewhere to donate—please consider RMHC Chapel Hill. I can’t say enough good things about them.
Here’s how it works: You need a referral from your child’s doctor, and you can only stay the night before and the night after a procedure. Since we go so frequently, they’ve allowed us to set up an ongoing referral, which makes everything much easier. Now I just call the day before to confirm that we’re coming up. For eye injections, we can still use the same referral, which is a huge relief.
There have even been times when, if James wasn’t well enough to travel home, they told us we could absolutely stay an extra night—if they had space. We never take advantage of it because we know there are other families who desperately need a room. But it’s reassuring to know they’re there when we need them.
Back in March, I called RMHC last-minute for an appointment at Duke, and they were fully booked. Still, the family manager promised to find us a place to stay, but I assured her we knew of a place. We ended up staying at our other “home away from home,” Tru by Hilton. We hadn’t been there since August 2024, but the staff remembered James! Called him by name, saw our name on the guest list, and were so excited to see him. Tanya, the breakfast manager, used to make him pancakes every morning before the hospital—and when we would come back from the hospital, they asked what we needed and how they could help. When we started staying at RMHC, they even called to check in on us because they hadn’t seen us in a while. Both of these places are filled with angels.
Anywho—sorry for the tangent on those places! Back to the injections!
James’s last eye scans didn’t show any vision regression, but the images weren’t very clear. We go back next Wednesday (which is also an infusion week) for another round of scans. Fingers crossed for stable results. If you’ve ever been to an ophthalmologist or had your eyes dilated, you know how long those appointments can be. James sits at two different machines for about 15–30 minutes each, which is hard for a little one, especially with limited vision.
He tries so hard, and I’m incredibly proud of him. There have been moments where mama bear came out and I’ve had to ask technicians to back off or let me talk to him instead of them. To their credit, they always back off and listen. His doctor is AMAZING—she finds a way to squeeze us in, even with a full schedule, and takes as much time as we need to talk everything through.
I truly can’t imagine going through this without the support we have—from his medical team, therapists, RMHC, Tru, and all of YOU. We’ve never needed this kind of help before, but now that we do, I see how powerful it is when people show up and fight for a child.
We don’t know what the future holds, but we’re doing everything we can to hold onto the light—literally and figuratively.
One last thing!
This past weekend, we visited the Charlotte-Douglas airport overlook. James was in heaven! Planes, trains, and “dig digs” (excavators) galore! The Norfolk Southern rail yard is at the other end of the airport, and you can just make out the train tracks. We went on a Sunday morning (we’re heathens! J/K)—not a lot of air traffic, but enough to make James light up with joy.
Despite being legally blind, James spotted planes taking off in the distance, and Cory and I looked at each other like, how in the world is he seeing that? Watching the landings was a blast too—guessing the airline (mostly American), watching them come out of nowhere like magic. It’s a memory we’ll cherish and plan to repeat soon.
I'm also working on a t-shirt design for James and Batten awareness and I’d like to hear your feedback. Hopefully the pictures posted here. Front then back. The editing is weird because I’m going off how it’ll look on the T-shirt design.
Thank you for continuing to walk this journey with us. Your support means more than words can say.