223: Noelle’s Story | A Terminal Diagnosis, Making Decisions Without a Roadmap, + Longterm Advocacy

Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be facing a progressive, terminal disease that no one, including their doctors, knew much about.In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the only option, and what it’s been like to live with that choice as the disease continued to progress. We also talk about what advocacy actually looks like long-term: fighting the same systems over and over again, pushing back when care is taken away, and the strange mix of exhaustion and purpose that comes with it.This is one episode you won’t want to miss!Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups! Listen to Ep 180: Does It Get Easier?Follow Noelle on Instagram @love_logan07!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode.