Christmas, Insurance, Infusions… Oh My!
This past Christmas was uniquely special, as the celebrations stretched over several days, giving us the chance to slow down and savor each moment. For James, it meant we didn’t have to rush through his gifts, and for us, it created space to truly appreciate the joy on his face as he opened each one.
With our trip to UNC on Christmas Day, we decided to save some of his presents for after our return. It was a small adjustment that made a big difference—James didn’t feel disappointed about leaving his new toys behind, and it gave him something to look forward to when we got home. We were also blessed to celebrate Christmas with my in-laws while we were near UNC.
Because of the timing of James’s infusions, we weren’t able to make it to all of our usual holiday gatherings this year. That was hard, but we’re hopeful that next year will bring the chance to join in all the celebrations we missed. This year reminded us that flexibility and resilience are as much a part of the holiday spirit as joy and tradition.
The days leading up to Christmas, however, were anything but calm. On Christmas Eve, I got a call from the specialty pharmacy telling me they were holding James’s infusion shipment because of unpaid insurance claims (I can neither confirm nor deny whether or not colorful words were used). With only two days before his scheduled treatment, I panicked. I called James’s neurologist, expecting to get voicemail (I mean, it was Christmas Eve), but to my surprise, she answered—on Christmas Eve. Who does that? Through tears, I assured her James was okay but I was worried about his medication shipment. A couple of hours later, I received a call back telling me everything had been resolved and we were a go for his infusion. If that’s not a Christmas miracle, I don’t know what is.
Fast forward a week, and we found ourselves speaking with two incredibly kind and helpful women from the pharmacy and insurance company. They took the time to answer every question, explain the process (more than once, because it’s seriously complicated), and most importantly, they listened. They understood our frustrations, worked with us, and found a solution that secured James’s infusions through January. These two women were instrumental in calming mine and Cory’s anxiety about his infusions.
At this point, I’ve become something of an expert in insurance navigation—not by choice, but because it’s necessary when managing a complex medical condition like Batten Disease. We’ve spent countless hours researching websites, online forums, etc. just to understand how certain processes work. Please note, we weren’t researching how benefits work for insurance members. We were researching how a process called, “white-bagging” works, what happens when claims are denied from a specialty pharmacy, reading and searching through 200-300 pages of pdfs on the medical side of insurance. Something NO parent should have to do.
As we step into 2025, I’m holding onto hope for a smoother road ahead. This past year has been a crash course in learning—about Batten Disease, about navigating the maze of insurance, Medicaid and CAP/C and about finding strength in the most unexpected places. If you’re walking a similar path, please know you’re not alone. Whether you need advice, a word of encouragement, or someone to simply listen, I’m here if needed!
We hope everyone had a joyful Christmas, Holiday and a Happy New Year! Here’s to 2025!
Much love!