The Atypical HUS Foundation

August 2012 Blog Posts (6)

Stopping Soliris

Hi all , our son Ryan has been on Soliris now since February this year and doing great on it but because he went into remission after his first episode of AHUS in 2010, our consultant is going to stop his Soliris now in a week and see how he goes.  The thought is he could be in remission and the only way of finding out is to stop it (he was in remission for 15 months before relapsing in Feb 2012).  An anxious time, of course the hospital will monitor his bloods, the plan is to test his…

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Added by sabrina kiernan on August 31, 2012 at 6:30pm — 8 Comments

One Crazy Year

A year from today things were starting to go down hill. Kidneys stopped, eye sight was terrible, pale face & constant vomiting. Nobody could ever understand how grateful i'am to be here in this world being able to type this and telling the world my story. I was that one 15 year old out of millions who only thought about death. Boy was I wrong, this crazy, emotional, beautiful ( in a weird way ) experience made me a stronger person and a believer of miracles because there is truly someone…

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Added by Ivette Rios on August 29, 2012 at 7:04pm — 2 Comments

School and the aHUS Child

As the school bell rings in the fresh start to a new school year, your child is probably be well prepared in terms of school supplies and a great attitude toward a new year of learning.  Consider another route toward helping to optimize their school success.  Does your aHUS child have an I.H.P. in place, with an I.E.P and  a 504 plan?  No, it’s not alphabet soup on the school lunch menu but rather educational jargon asking if your child’s public school staff has met with you, determined…

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Added by Linda Burke on August 21, 2012 at 2:00am — No Comments

Random blogger

When i was serving at my job last night i met this lady who blogs. She asked me about my tattoo and what it meant to me and i told her how i fell ill and it helps me to move on in life ("this too shall pass"). She had me tell her more and more about my story and she posted this blog this morning http://breathewithyourheart.blogspot.com. There are a few errors in spelling and such, but some people are just so thoughtful!

Added by Danielle Giardina on August 18, 2012 at 9:11am — 1 Comment

Christian's Conquest - Aug 26th is the Kidney Kickoff!

 Christian's Conquest:  Join their event  “Kidney Kickoff” and rock the Pontchartrain Yacht Club August 26th   in Mandeville, LA !  Celebrating Christian's placement on the kidney transplant list, this fundraising event will feature a silent auction of great items and services as well as a Celebrity Raffle for a pair of 2012 LSU Season tickets in Sec 304 of Tiger Stadium!

LSU Fans: Grab those tickets now, and get ready to bid on a signed football from…

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Added by Linda Burke on August 16, 2012 at 11:10pm — No Comments

summer fun

Hi all!

We have been enjoying this summer so much!  We have been watching Nathan grow!  Nathan eat, a lot of eating!  Nathan has learned to ride a bike and can now swim too!  Like everyone else, summer is crazy busy here in the Biermann household, we have three employed kids and have been driving the youngest back and forth to her job, which she loves, at Six Flags. 

Right now, we are gearing up for a trip to St. Augustine's, FL, so if anyone wants to let us in on any…

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Added by Cheryl Biermann on August 2, 2012 at 2:04am — 1 Comment

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