The Foundation for Children with Atypical HUS

Just thought I'd give you an update on Riley. He is now 3 and a half months post liver kidney transplant. He is doing absolutely brilliantly. Both organs are amazing and he is on the lowest tacrolimus level just 0.5mg twice a day!!

He returned to school 3 weeks ago and is loving it. I will go back to work next week. I actually can't wait after 3 months off. Bet I change my mind after the 1st day back in with a load of cocky high school kids ha.

It's like Riley has had a personality transplant too. He is sooo energentic he loves being able to eat whatever he wants and drink as much as he likes and it is so nice to watch after nearly 2 years of dialysis.

I am so proud of the way he has coped with everything. He is so strong for such a young boy. I am just so happy to have my four year old back the way all children should be. Thriving and enjoying a good quality of life!

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Comment by Svetlana Finley on March 14, 2011 at 10:38pm
Awesome updates!!!!!
Comment by Zofia on March 13, 2011 at 4:40am
So happy for You :)
Comment by Linda Burke on March 12, 2011 at 9:44pm
Sounds terrific - so happy for your family !!!
Comment by Cheryl Biermann on March 12, 2011 at 5:57pm
Woohoo!  Way to go Riley!  Go get em boy!  Stacey, you'll have to update some pictures of him soon!

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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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.
  
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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.

  

  
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Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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