thanks for the welcome, I wish we didn't have to meet because of having something so awful in common, but it's comforting to know I am not alone. My Son was extremely fortunate to receive Soliris within 72 hours of presenting. He was REALLY sick but is showing improvement Thank God. The doctors arent happy with his improvement but I am! He came out of ICU in 11 days. We are so new to this that my head is spinning but am trying to read, read, read.
Again, thanks for the support and thank goodness for such an informative site!
Posted on December 28, 2015 at 2:54pm — 2 Comments
Posted on May 18, 2015 at 11:35am
Posted on April 8, 2015 at 9:48am — 1 Comment
We celebrated Matt's 23rd birthday yesterday! 15 months after diagnosis, we still are endlessly grateful that he is with us.
I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available.
For anyone who has not attended a meet up, I encourage you to consider attending. Putting a face and a hug to someone who has walked your path is unbelievable. To reassure the family who is new to this disease…Continue
Posted on December 18, 2013 at 10:40am — 4 Comments