The Atypical HUS Foundation

Jonathan Aguallo
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Jonathan Aguallo's Page

Profile Information

Birthday
July 5
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
No
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

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Jonathan Aguallo's Blog

Happy Thanksgiving from the Aguallo Family

The Aguallo Family would like to wish everyone a Happy Thanksgiving. 

We haven't posted in a while.  As many of you know, we moved from Charlotte NC, to Northern CA in the summer of 2013.  This was a big move given Ben's aHus and our deep connection to his medical team; however, life goes on and so do we...

Overall, we have been pleased with the care at Standford Children's Hospital. We have adjusted slightly a few blood pressure medications, and decided to give home infusions…

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Posted on November 28, 2013 at 9:17pm — 3 Comments

Check in - Benjamin Aguallo

We wanted to wish every the very best of Holidays. As we read the recent blog posts our prayers and thoughts are with those facings current aHUS relapses / new diagnosis.



We did want to post a quick update on Benjamin. As many of you know, Benjamin started Soliris in early fall after his 3rd relapse. He has a mutation of his Factor H protein. So far, we have been very pleased with with Benjamin's health. Labs continue to come in at normal levels and little variation. We also check… Continue

Posted on December 29, 2012 at 8:26pm — 3 Comments

Ben and his first dose of Soliris!

...we wanted to provide an update on Ben post his first infusion of Soliris. Approximately, 96 hours post his first infusion platelets rose to 288 vs a pre Soliris baseline of ~170 - 190 (38%) and LDH dropped to 175 from a baseline of ~180 - 200 (11%).



We realize this is just the first dose, and one set of labs does not make a trend; however, we really haven't seen platelets that high in 2 years.



We will continue to monitor side effects. Ben was in the midst of a stomach… Continue

Posted on June 26, 2012 at 12:40am — 1 Comment

Update on Ben Aguallo - The Journey takes a new path...

...Well.... looks like Ben is in the process of starting a relapse.  While at Victory Junction Camp this past week, Ben was stricken with a stomach virus, where he vomitted and lost his appetite.  On Friday, we picked Ben from camp, and headed straight to Levine Children's Hospital to run labs.  The lab results were not bad:  HGB 13.5 (a little high due to dehyrdation), Platelets:  168, LDH: 190, Creatine .8.  Blood Pressures were very very good as well 110s / 70s.  With those results, we…

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Posted on June 18, 2012 at 8:54pm — 5 Comments

Comment Wall (9 comments)

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At 11:19pm on August 27, 2011, Linda Burke said…
Thinking of your clan and hoping that y'all are doing fine post-Irene.....
At 12:16pm on May 19, 2011, Vicki Ravely said…
sorry I am so late in responding.  Had a knee replacement in January and hadn't been on this site for quite a while.  Paul is still on Soliris, his high BP issues continue (unlike the others on Soliris who's BP stablilized).  Paul does not have the H factor, so that may be the difference, they are continuing to monitor and change meds.  Please feel free to contact me.  Vicki
At 11:49pm on March 18, 2011, Linda Burke said…

Hope Ben's feeling better now.  Viral exposure and common colds have swayed Skyler's labs all over the place for 2 months...just got back the first full 'good' set of labs this week.  Nothing major or alarming, just enough to concern us - all our aHUS families know this dark cloud of uncertainty all too well.

Keeping your family in my thoughts and prayers, Linda

At 8:36am on February 7, 2011, Colette Ann Frysz said…
Jonathan,  I'll be happy to answer whatever questions you may have.  I'll answer as best as I can whatever you ask.
At 9:51pm on January 8, 2011, Linda Burke said…
Hope that Ben's doing well and that you've heard some positive news regarding Ben's progress over the last few days!
At 10:34pm on September 28, 2010, Linda Burke said…
Love the profile photo! ;-D
At 4:13pm on September 18, 2010, Cheryl Biermann said…
Hi, and Welcome!
At 10:49am on September 18, 2010, Jodi Kayler said…
Jonathan, Welcome to the community. I hope Ben and your family is finding a little bit of normalcy (if that is possible) since being at home. My son, age 7, (Coen) and has had HUS since he was 11mos old. Much of Coen's story is in the Soliris forum if you are interested. Let me know if you have any questions.
At 2:37pm on September 15, 2010, Linda Burke said…
Welcome to the website! As Ben's father, your family has been in our prayers. We're glad to hear that Ben's begun 1st grade and is doing well !
 
 
 

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