Hello again.... We wanted to take some time to update the aHUS family about Ben Aguallo....
Beth and I can still remember sitting in the patient room at Ben's Pediatrician's office looking at Ben and wondering what could be causing him to look so pale and be so sick. Normally I do not go to doctor's visits. Most of the time the Dr. prescribes an antibiotic and the kids get better. However, something did not feel right about this situation, and I wanted to be there with…Continue
Jose has a kidney since six months ago with Soliis . He is happy his clinicals labs are good, only a little problem with the high blood preasure in the night. . Now I am waiting for the results from USA to change the time to Soliris dosis each 21 days , Now is doing from 15 days ( 600 mg ). He has not any secundary effect .
Hi everyone - I've got to get in a little better routine on updating - think I may start updating just on clinic/Soliris days which as of now will be every two weeks. I know some of you get nervous if we go too far between updates! First all the good news - we are moving to once a week labs and every other week clinics as of now - woo hoo - we had thought we had 2 more weeks of twice a week trips to Egleston so this makes Mommy very happy! Also - Hyde's creatinine is…
I don't post much but I always check in to read others updates and always keep these kiddos in our prayers. Brody will be 3 years old on April 2nd! We are so excited and feel so blessed. He keeps us very busy and is a non-stop chatter box. Literally it is hard to get a word in when he is around and it is impossible to argue with him because he will never give in (I'm sure he didn't get that from me;).
It's hard to imagine life with him sick again but it's always a constant worry in…Continue
DANA POINT, Calif. – The 4th Annual World Rare Disease Day took…
Added by Linda Burke on March 15, 2011 at 1:30pm — No Comments
Hi everyone - sorry for the lack of updates last week! No news is good news. I also have to apologize for my typing/spelling in the last updates - I did them from our ipad and even though I love it - the keyboard's just not the same -(. Hyde's been doing pretty well and rocking along - he did get a nasty sore throat last week and we had our first visit to the pediatrician's post-transplant (have I mentioned that I LOVE our pediatricians?) Anyway - his throat was ucky…
Just thought I'd give you an update on Riley. He is now 3 and a half months post liver kidney transplant. He is doing absolutely brilliantly. Both organs are amazing and he is on the lowest tacrolimus level just 0.5mg twice a day!!
He returned to school 3 weeks ago and is loving it. I will go back to work next week. I actually can't wait after 3 months off. Bet I change my mind after the 1st day back in with a load of cocky high school kids ha.
It's like Riley has had a…Continue
The Foundation for Children with Atypical HUS is pleased to announce the addtion of two board members: Linda Burke and Phyllis Talbot. I know you are all familiar with their hard work and dedication.
I think our organizaton will be strengthened by addiing two parents who are deeply involved with the Foundations Mission. They will be replacing Helen Greaves and Fred Biermann. Helen was the catylyst behind the initial Atypical HUS fundraisers…Continue
Today, we pray for a long-time friend who it seems may finally have a kidney which meets his specific needs. He has had two near misses this year alone and we are praying this time is a good match and the anitbodies cooperate. Being a teen, he has been with us for a long tme, and like us has rejoiced when one of the other children were transplanted,overall he and Nathan seem to accept the ebb and flow of their friends and not dwell on "Why not me?"
When their friends are…Continue
The work of Dr. Tim Goodship, whose leadership in aHUS research has added clarity to the complex issues associated with this ultra rare disorder, has just informed us that he is organizing the FIRST conference for atypical HUS patients and their families in the UK.
Dr. Goodship announced: "On Saturday 11th June 2011 we will be holding the first UK aHUS patient-family conference in Newcastle upon Tyne. Preliminary information about the conference is…Continue