All Blog Posts (550)

Hi all,

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…

Hi Everyone,

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. 

I would…

Hi everyone,

First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.

Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.

Yesterday we were first ones to see our doctor and last ones left her office…

Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful.  Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours.  The only thing they did was to suggest vicaden.  Anna will be seing her nephrologist in the morning. 

For those of you who may not know Anna often had back pain associated with her…

Alone we are rare…together we are strong.

It's not just the slogan for the global campaign marking Rare Disease Awareness Day on February 29, 2012. It's also the rallying cry for "SOARING VOICES" a grassroots effort by patients, friends, and families who…

Sorry everybody for not posting for a while. I was very busy with work and getting ready for a trip, which I took this past weekend to California. The trip I took was to go to an event sponsored  by the Renal Support Network (RSN) called the Renal Teen Prom. Yes, I know I'm not a teen anymore, but this event is for patients 14-24 years old. This event is like no prom you or I have ever attended at our high schools. This prom is a big party!!! Hundreds and I mean HUNDREDS of kidney…

        SUPPORT THE FOUNDATION FOR CHILDREN WITH ATYPICAL HUS FOR AS LITTL AS $5

Hi again...it's that time of year for The Foundation for Children with Atypical HUS, St. Louis.  This might be a long shot, but I know the Cardinals have far reaching fans.  This year you may want to participate in our raffle, it is chance to win

a David Freeze autographed and framed picture of his walk off home run this year OR third prize, a Whitey Herzog ouautographed…

I you go to the link, you will find a story, that I cannot believe is happening in this country, especially because the family is willing to be the donor.  There is a petition to sign as well.  I'm not normally too much of an acivist, but I think we all can see the value in a kidney transplant  for anyone dealing with the hardships of kidney failure.…

Just popping in to say hello. It's been whirlwind down here in New Orleans this last year. Sorry we missed Iowa - Aida and I would have loved to catch up again.

It was real nice visiting in CT - even if it was such a short time together.

Christian is doing real well - he has started Soliris as of Nov 2011 and is being worked up for transplant by Texas Children's.

Hope everyone is doing well and it's great to see so many stories of progress with…

Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness…

 I would like to take the time to wish all of the Atypical HUS families a very Merry Christmas and a healthy happy new year! I hope that 2012 will be better for all who have been touched by this disease, including myself. I may not have a job yet and I certainly may not have a kidney just yet, but I am hoping that 2012 will be bringing me better things to look forward to. One thing that will HOPEFULLY be occurring is a potential trip to California to attend a renal teen prom sponsored by the…

The Aguallo Family would like to wish everyone a very Merry Christmas and aHUS free New Year!  We love each and every one of you!

Technology may yield some impressive press for innovations in 2012 and beyond, so please scan your news sources and draw our attention to any stories, articles, or research that may be of interest to the aHUS community.

While it remains to be seen whether Dr. Shuvo Roy and his team at the University of California will continue to make good progress with their artificial implantable kidney, we applaud the efforts of all researchers and clinicians worldwide who strive to improve the…

Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones.  So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season.  If any of you find yourself in a bad health situation, please let us know and we will flood you  with prayers and…

Hannah is responding wonderfully to the Soliris treatments. She is still receiving them every two weeks (due this Friday). Her kidneys have returned to 100% function, she continues to gain her weight back and is considering enrolling in school after the holidays. Still, the most devastating for her, is the loss of her hair. She is still beautiful, but it's hard to convince her. Very traumatic. Please continue to pray for her as her doctors determine the appropriate time to "wean" her off…

As my last blog stated my luck could be changing well... that isn't true anymore. What seemed like things were moving onward are now back to square 1. I interviewed for that job, didn't get it. I called the other veterinary clinic I interviewed at and was told that I would be considered for part time, instead of full time (which is partially good news). And lastly, the kidney front is now back to square 1, because my donor is now not a candidate to donate a kidney. So, I had suffered at…