Rare Disease Day is fast approaching - this Wednesday, Feb 29th! From the lush scenery in a UK entry to the cute faces of our adorable aHUS children to the moving stories represented in the slideshows of our adult patients - you have painted a visual picture of hope in the face of challenging circumstances.
Please double- check here http://www.youtube.com/user/aHUSrarediseaseday to make sure that…Continue
Added by Linda Burke on February 28, 2012 at 1:32am — No Comments
Hi everyone, you might have thought I forgot about you for the biopsy result but we've been going back and forth with the dr's while they mull over how to handle the biopsy results. It wasn't horrible but it definitely wasn't the best news either - the pathology report showed 'borderline acute rejection'. I know this sounds alot like the first biopsy he had back in August - but that one actually said that it might be the result of a poor sample, and it was…
Talk about a wonderful Valentine's present for the world's aHUS community - comprehensive video presentations about atypical HUS! The University of Iowa has robust patient and research programs that provide cutting edge information and services to aHUS patients and their families (see The University of Iowa Children's Hospital http://www.uihealthcare.org/PediatricKidneyDisorders/). At an October 2011…Continue
Added by Linda Burke on February 6, 2012 at 11:00pm — No Comments
sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps and to receive IV anti's til negative cultures come back for line infections/meningicoccal etc!!!
On the home front 8 days ago on the 28th of January we welcomed our 5th child into our family - a little boy named Oliver (Ollie). Unfortunately i ended up having an emergency…Continue
Hi all - let me start by saying this isn't exactly how I imagined writing this update - I'd been planning my big Kidneversary update in my mind for the last couple of weeks and as usual - Hyde had other plans!
On the short term front - yes we are home. The feeling for now is that Hyde's mouth sores were due to the medicine change, and he also got hit around the same time with some type of nasty virus causing the high fever and diarrhea. He's been fever free…
I'm working on a new video to promote the Hike for Hyde, and had an idea to incorporate not just photos of Hyde and Bryan, but photos of as many kids as I can get to help show all the kids that the fundraiser benefits. If anyone would be willing to send me pictures to include in my video (slide show presentation), please send me a message through this site, and I'll message you back with an email address where you can email your photos.