The Atypical HUS Foundation

Jonathan Aguallo
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Jonathan Aguallo's Page

Latest Activity

Jordan Terrell Johnson and Jonathan Aguallo are now friends
Jul 8, 2014
Anne Bruns commented on Jonathan Aguallo's video
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Rare Disease Day 2012 Tribute to Be

"this is a great video! go ben!!"
Feb 2, 2014
Phyllis Ann Talbot commented on Jonathan Aguallo's blog post Happy Thanksgiving from the Aguallo Family
"Happy happy thanksgiving!  - Oh and Svetlana - Hyde has had a port since 2008 and he's played soccer, baseball, and now basketball with it.  (albeit as a little guy but he's kind of a nuts).  our dr's haven't…"
Dec 4, 2013
Svetlana Finley commented on Jonathan Aguallo's blog post Happy Thanksgiving from the Aguallo Family
"Awesome!!, Happy Thanksgiving to you too!! Glad en is doing well, Anna is on home treatment, we had few times where they couldn't get her veins, we had to try on next day. Ben still has port and playing sport? Our doc didn't want her to…"
Nov 30, 2013
Linda Burke commented on Jonathan Aguallo's blog post Happy Thanksgiving from the Aguallo Family
"Good to hear from you - love the new photo of Ben with his lacrosse stick!  NORD is hosting an aHUS regional meeting in Carlsbad, CA on Dec 6-7th, a great opportunity to connect with other aHUS families.  (Further info available at…"
Nov 29, 2013
Jonathan Aguallo posted a blog post

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 a try.  While we…See More
Nov 28, 2013
Jonathan Aguallo posted a photo
Nov 28, 2013
Jonathan Aguallo posted photos
Mar 1, 2013
Jonathan Aguallo and Sharon Madrid are now friends
Mar 1, 2013
Linda Burke commented on Jonathan Aguallo's blog post Check in - Benjamin Aguallo
"Thanks for sharing the good news that Benjamin's health continues to be fine.  NORD is planning an aHUS regional meeting in Atlanta (travel stipends available) in the next few months, so that might be a good opportunity to ask questions…"
Jan 5, 2013
Cheryl Biermann commented on Jonathan Aguallo's blog post Check in - Benjamin Aguallo
"Hehe, you might also want to check out the forum on home nursing before you go ahead, if anything can go wrong it does, especially to tye Biermanns."
Jan 3, 2013
Diane schaller commented on Jonathan Aguallo's blog post Check in - Benjamin Aguallo
"Hi Jonathan, my name is Diane, my daughter, Devon was diagnosed back in March of this year. She started on Soliris in April and like Benjamin, she is also doing very well. One bit of advice I might give you, When you plan to start home infusions,…"
Jan 3, 2013
Jonathan Aguallo posted a blog post

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 protein levels…See More
Dec 29, 2012
Barbara Farcher commented on Jonathan Aguallo's photo
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Aguallo Kids - Thanksgiving at the Beach 2012

"Beautiful picture!!! He looks so healthy :))  and they are all beautiful!"
Nov 28, 2012
Jonathan Aguallo posted photos
Nov 25, 2012
Jonathan Aguallo commented on Sharon Madrid's blog post Possible Relapse....
"The Aguallo Family is thinking of Marissa.  We hope everything works out."
Nov 25, 2012

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…

Continue

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…

Continue

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 !
 
 
 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

************************

NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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