-
Virginia (jenny) Aguallo
- Female
- Clemmons, NC
- United States
- Blog Posts (2)
- Discussions
- Events
- Photos
- Photo Albums
- Videos
Virginia (jenny) Aguallo's Page
Latest Activity
Virginia (jenny) Aguallo commented on Steve Greene's video
Hunter Burke Slideshow: Turn up speakers!
"What beautiful children. I am Ben Aguallo's grandmother. I am so sorry that you had to lose Hunter to this terrible disease, but I am thankful for the drug Solaris that has enabled to to continue having Skyler in your life.
I…"
Donna Kolp commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Praying for Little Ben....May God watch over him"
maria vicenta carratala rios commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Sending prayers from Spain and much love to little Ben. Thanks for the update"
"Ben's a fighter! I'm so glad to hear he made it through the cath! Please continue to keep us posted when you can. I'm praying that you are all enveloped in strength and love and healing."
lisa ann peterson commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"thanks for the update.. i have not been able to get your lil guy off my mind i pray that he pulls through all of this.praying for better days and healing.. god bless"
Cheryl Biermann commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Jenny,
Thank you for the update, we are all so thankful he made it through the biopsy...we will keep praying and keeping you all in our thoughts as we wait anxiously for signs that things are starting to turn a corner for better days to come."
Virginia (jenny) Aguallo commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Ben made it through the heart cath. At this point, they think maybe viral caused this, but will know more when the biopsies are back. Again, they did get enough tissue in case he needs to be put on the heart transplant list.
Here we worried about a…"
Linda Burke commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Jenny,
Words cannot adequately express what is in my heart.....our thoughts will be with you and your family, wishing Ben strength and praying for positive news."
Jodi Kayler commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"My heart and prayers go out to sweet Ben. We are looking forward to positive news from the procedure. Take care."
Amy Swarbrick commented on Virginia (jenny) Aguallo's blog post Ben, my 6yo grandson"Sending much love your way. I think I can speak for us all on this site that we cry and pray with you. God bless your little grandson Ben."
Virginia (jenny) Aguallo posted a blog postBen, my 6yo grandson
Today Ben is having a heart cath. He has had aHUS for 4 months now. His HUS is fairly quiet, labs look great. His heart has moved to the front of the line. Due to the fluid in his lungs, they thought initially that he had pneumonia, wrong, it was cardiomyopathy. That was about 5wks ago. With meds, they got his heart to pumping at 25%; two days later back to 15%.Over the weekend, his heart is only pumping between 7 and 12%. Of course this causing his lungs to be very wet. Increasing meds too…See More
Colette Ann Frysz commented on Virginia (jenny) Aguallo's blog post My 6yo Grandson, Benjamin"Jenny,
I've spent many a night just making sure my daughter was breathing. I've often thought what if she leaves us in the night and I have to find her in the morning? It is out of our hands completely and I just pray to God to give me the…"
Profile Information
- Birthday
- January 28
- 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?
- Yes
- My membership request involves business interests as I seek additional aHUS information for business applications.
- my grandchild has AHUS
Virginia (jenny) Aguallo's Blog
Ben, my 6yo grandson
Today Ben is having a heart cath. He has had aHUS for 4 months now. His HUS is fairly quiet, labs look great. His heart has moved to the front of the line. Due to the fluid in his lungs, they thought initially that he had pneumonia, wrong, it was cardiomyopathy. That was about 5wks ago. With meds, they got his heart to pumping at 25%; two days later back to 15%.
Over the weekend, his heart is only pumping between 7 and 12%. Of course this causing his lungs to be very wet.…
ContinuePosted on August 2, 2010 at 11:56am — 9 Comments
My 6yo Grandson, Benjamin
My daughter Marci has been asking you a lot of questions in reference to her nephew, my grandson, Benjamin. Today I am really sad and just need to vent.
Benjamin has been struggling with A-HUS for a little over 3 months. As Marci has told you, he now has cardiomypathy and along with all the other meds, they have added heart Rx. He had had 3 great wks before this and even went to soccer camp for a few hours a day for a week. We were so excited, then 2wks ago, Ben told his Dad,…
ContinuePosted on July 20, 2010 at 5:44pm — 8 Comments
Comment Wall (2 comments)
- At 11:04am on May 12, 2010, Cheryl Biermann said…
- Welcome Jenny!
Knowing how much my parent's and Bill's parents suffered from not knowing and not able to understand our explanations of this disease, I am so happy Linda and her family have set this site up...read everything you can get your hands on, and feel free to ask all the questions you like, also know that we pray for each other on a daily basis. From the parent's side, having someone to talk to who is knowlegable will be a tremendous help! Thank you for joining.
- At 1:10pm on May 11, 2010, Linda Burke said…
- Hi Jenny,
Welcome to the website, I'm so sorry that your grandson has to deal with aHUS. At the top of this page, above the cute colored bubble faces, you'll see a tab "A Parent's Perspective". It has many of the basics you might want to know, but please do ask questions and we'll try to help as best we can.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by
