This is the story… RARE DISEASE DAY!

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html

 

Hopefully this link takes you to the full article.

Thanks everyone… and I mean all of you.

Lots of people were mentioned in here.  In reality our support network is much larger and includes people we will never meet.

Love you all!

Lori