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:
http://www.sheknows.com/parenting/articles/962672/mom-story-my-son-has-niemann-pick-disease
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:
http://blogs.wsj.com/photojournal/2013/12/10/trials-a-race-to-save-a-boy/
Subscribe to:
Post Comments (Atom)
0 comments:
Post a Comment
I love hearing from my readers. Please leave a comment to let me know you stopped by. :-)