A Once-in-a-Lifetime Meeting

This is the first time my brother Ben has ever met someone as rare as he is. Ben is 29 and has an ultra-rare condition called tub 4A-related leukodystrophy, more specifically HBC. It took over 28 years to get the diagnosis, and for those 28 years, we didn't know a single person who understood what then or our family was going through. But after his diagnosis, we learned there are others out there, a small population of only a few 100 people worldwide. But for the first time, we had a name for the condition and could start searching for others. So, we took Ben's story online, not only to show his joy and what's possible through the technology we've built, but to connect with others on similar journeys. That's how we found Eloise. The girl living with HBC is only 350 miles away. She's now 20, and her family, like ours, has shared her journey online to raise awareness and bring hope for a cure. Hi, everybody. Through social media, we were able to connect with them anyway. What do you like most about school? The Voice. Ohh, my goodness. What did you like about school when you used to go to school? Don't say. Your favorite what? Your favorite color? Hey, they built a friendship through screens, and we even talked about the possibility of meeting one day, but with Ben's complications, we weren't sure if we could make it happen. Eloise's mom was determined. Ben is meeting Eloise for the first time today. She and her mom. Flying in from Maryland for a day just to meet, then they're going to be here any minute. Are you excited? Yeah. This might look like a simple meeting, but for us, it was a reminder of how rare. A beautiful and powerful connection can be. If moments like this resonate with you, please share them to remind everyone they are not alone.