I know it has been awhile since I wrote about what has been going on in the life of Jonathan :) Jonathan started his Senior year of high school in late August, and is loving it! He is now going all day, except for when he gets his plasma transfusions, which is 3x a month. According to his teachers, he is an excellent student, doing well, and I was told that he is VERY social. LOL.....He actually told me he acts differently around us ( Mom & Dad). Well, I knew that :)… Continue
Added by Donna Kolp on September 28, 2010 at 6:39pm —
This is the first time that we, Jonathan and Beth, have posted an update on Ben Aguallo. We visit often and read the updates from the other members and we pray for each… Continue
Added by Jonathan Aguallo on September 28, 2010 at 10:17am —
Hi there everyone - I had to look back to see what was the last I'd written because it's been so crazy the last few weeks. Where do I start? Well - I guess I'll start with the not too fun stuff first - Hyde had a double whammy hit him last week - I swear - poor thing has to be one of the unluckiest kids on the planet - he started running a pretty high fever last Monday night (and some of you may remember we are a little nervous around…
Added by Phyllis Ann Talbot on September 27, 2010 at 3:39pm —
well good morning all... the softball tournement was a sucess we raised a little over 2,000 for the foundation and we had alot of fun doing it... there were 6 teams and lots of prizes.. next year will be even bigger i hope.. also just an update on lil miss sunshine she went to the doc last wed and Dr.H said that hopefully she will hold out till november and not relapse before then.. her ldh and creatnin were a little bit higher and we are still waiting on the c3 and c4 and… Continue
Added by lisa ann peterson on September 27, 2010 at 11:24am —
Has anyone had or heard of hives being related to this disease? Jacob seems to break out every ten days and is misserable! It seems like we can't go the three weeks that the doctors want us to for the FFP and epogen.
Added by Terry Huber on September 22, 2010 at 6:30pm —
Our fourteen year old son Ian, is a dialysis patient at Childern's Hospital In Boston. He was first diagnosed with AHUS in 2000, and received a kidney transplant in 2002. However the HUS recurred within two months of transplant. Since then Ian has been on PD, and for the last three and a half years on Hemodialysis. He has complement factor I and MCP mutations.
The prospects that Eculizumab (Soliris) offers are very exciting to our family, as they must be to many others with AHUS. Ian's… Continue
Added by Peter Brown on September 15, 2010 at 10:07pm —
we are getting read for the second annual "tuff hat softball tournement" cause we all wear tuff hats when we have a loved one battling ahus.. we are getting so stoked this will be the firat time we will be able to donate all monies to research.. thanks to all of my girls helping me put it on.. also lil miss is doing rather well except mommy has walking pnemonia i found out today and i got sick from lil miss so i will be bringing her in on monday.. i thought i just had a nasty chest cold but… Continue
Added by lisa ann peterson on September 11, 2010 at 9:23pm —
Some news has been publically posted regarding the clinical trial of Soliris (eculizumab) for pediatric patients with atypical HUS. As an independent and unaffiliated organization devoted to education, support, and outreach for aHUS patients and families, this interactive website of the Foundation for Children with Atypical HUS recognizes that some in our community are highly interested in this trial.
On August 31, the National Institutes of Health posted an overview of the trial on… Continue
Added by Linda Burke on September 9, 2010 at 9:00pm —
Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms can face upwards. They did xrays and it showed that she has no joint in her elbow and her 2 forearm bones are fused together. We have now been refered to a different specialist and a genetisist because they said that the type of thing she has is… Continue
Added by Kerri Grey on September 2, 2010 at 10:18pm —