Last year in Nashville, the first family we met was the Papier's: mom Darrile, dad Mark and son Dillon.
Dillon reminded us of Dan, even though he was a few years older. We spent some time talking with them and I spent some additional time with Darrile at the NNPDF meetings.
Shortly after the conference, I found this article about Dillon:
Last month I posted the Wall Street Journal Article about how long it has taken to bring a potential treatment through the research to clinical trial. Part of that article had a video of Dillon:
Dillon has recently been re-enrolled in the cyclodextrin clinical trial. Amy Markus, the Wall Street Journal reporter, has followed Dillon as he continues on his journey: