Previous thread - https://www.reddit.com/r/MadeMeSmile/s/YMTBLotrEY

Original Post:

https://www.reddit.com/r/MadeMeSmile/s/pvsMbXYCKu

My brother Ben has a rare condition called TUBB4A-related leukodystrophy (H-ABC). He's 30 now, but we didn't get a diagnosis until 2024, at 28. For years we had no idea what we were dealing with, or whether anyone else out there had it too.

After the diagnosis, we started searching social media for other families. That's how we found Elouise.

Ben communicates using the tech we built for him, so he and Elouise started texting, and we did a lot of video calls early on. Eventually, it became a dream to actually meet her in person. Ben can't fly, and we didn't have a vehicle that could handle a long drive, so Elouise and her mom flew out to us instead. We spent the whole day together, talking, playing games, and just being friends in person for once. It was everything.

That was almost a year ago.

Since then, we got a new van, and Ben worked hard on building up his stamina for a long drive. This time, we went to them.

It was awesome.

Thank you for watching, and for letting our little story matter to you too.