The Atypical HUS Foundation

Our daughter Lily, age 11, was just diagnosed with aHUS in February 2014.  After 2 bouts of the flu which were her trigger, she suffered total kidney failure in February 2013, leaving her in a coma for a week and on on round-the-clock dialysis for two weeks.  She spent a full month in the hospital and 3 months on dialysis 3 a week. She has been on 7-8 daily blood pressure medications since then and her doctor made the final diagnosis of aHUS (based on clinical observation, no genetic confirmation yet) just a few months ago. Lily started on Soliris on March 20 and we look forward to good results.

We attended a NORD Conference in Jersey City this past weekend and found it a very enlightening experience and very supportive environment of other families who are dealing with this same very serious and life-changing illness..

We look forward to participating in the community here.

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Comment by Denise Schmidt on July 13, 2014 at 6:30pm

Chris, I'm from Limerick PA. Not far from you.  My daughter was diagnosed 2 years ago.  She is now 25.  Good news is that she was on Soliris for 9 months and her kidneys recovered enough that she was able to stop dialysis.  I hope Lily has the same kind of success.  Anyway, we're close by if you need anything or have questions. 

Comment by Marilyn Cline on July 3, 2014 at 5:12pm
I hope and pray Lily gets better with the Soliris. It saved my life.
Comment by Kerry Waters on June 8, 2014 at 11:32am

Chris,

My nineteen year old son was diagnosed with aHUS in March. Your experience sounds scarier than ours! I can tell you that after several scary months of waiting on lab results, kidney function to return, and Soliris to work, my son is doing much better. Right now his biggest concern is the thinning of his h'air! Please keep us posted on Lily's progress! All I can say, is we are fortunate that our children are experiencing this horrible disease in 2014 unlike several of the other parents who traveled this journey prior to FDA approval of Soliris! Best wishes to you!

Comment by Cheryl Biermann on June 6, 2014 at 11:05pm
Chris, I am sorry you are living this nightmare, but welcome.
Comment by Cheryl Biermann on June 6, 2014 at 10:58pm
Thanks again Dana for representing the foundation. Welcome to all our newbies, hopefully we'll all meet in Iowa!
Comment by Dana M Simone on June 4, 2014 at 9:28pm
Chris - it was great to meet your family at the NORD event. We were so impressed with Lily's confidence in taking the mic to introduce herself, and with her great attitude. So happy you've joined the Foundation - please keep us up to date on Lily's progress.

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