The Foundation for Children with Atypical HUS

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…

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 c-section so recovery is a little slow and it also meant that i had to stay i hospital a little longer than a normal delivery so for the very first time ever Ashley's dad had to take Ashley to have his solaris infusion without me there, i felt horrible not being there for him, but everyone managed to survive!!! 

i had better get back to all the kids, i will try and make more time to check in a bit more often!!!

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Comment by Michele Haymes on February 22, 2012 at 5:15am
Hi Kerri, apologies but I tried to respond to your email introducing yourself, but it appears that my reply email went into the Bermuda triangle of the Internet world. I've just tried to add you as a friend so I can send you messages. Would be good to swap stories. Jeremy is being treated at Monash Medical so we are not at the same hospital. Hope to chat with you soon. Cheers, Michele
Comment by Cheryl Biermann on February 11, 2012 at 12:27am

Hi, Kerri!  I bet they were all happy when you brought Ollie home!  Let them help! 

Comment by Grace on February 7, 2012 at 8:37pm

congratulations! and thanks for sharing the precious pictures! 

Comment by Linda Burke on February 5, 2012 at 12:26am

Thanks for adding the adorable photos, Kerri. - don't know how you've had time to catch your breath!  Ollie seems like a handsome love.....hope he's settling in well and letting you rest a bit.  So happy for your clan....

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.

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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...

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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
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