Sounds like you might be talking about Jake Seliger, and indeed, his and Bess' fight to get treatments was rather eye-opening for me too.

Jake's blog where he posted throughout his entire illness: https://jakeseliger.com/

Bess' blog: https://bessstillman.substack.com/

It was a heartbreaking story to follow, and one that hit me a lot harder than I thought it would when Jake died.