The Foundation for Children with Atypical HUS

Hello all,

This post is a much better one that the last.......

Jonathan had his Bilateral Nephrectomy done last Monday. What was to be a 3-4 hr. surgery, turned into a 7 hr. surgery. Jonathan had alot of scarring and adhesions on his right side due to all the years he was on PD. It took the team almost 5 hrs. just to remove the right kidney. The biopsy came back and NO CANCER!!!!! I was afraid Jonathan would think it was all for nothing, but then he said to me that he would never have to worry about cancer in his kidney's ever again, and that he was thankful he would be able to keep his "great looking hair". I have to give thanks to all that prayed for him, and for us. Thank you from the bottom of my heart!

I would like to mention Jonathan's High School....McKinney Boyd High....Talk about an outpouring of love and support. He had 2 of his coaches come and visit him in the hospital, and when he got home the Vice Principal came by the house, gave Jonathan a Christmas present and informed us that the girls basketball team made t-shirts that say "Team Jonathan". She came by again yesterday, and the girls soccer team had made Jonathan get well cards, and sent him $250.00 worth of give cards and money! We...for the first time....are speechless... His peers came through for him and showed him how much they care.

I just wanted to share the good news, and we are TRULY BLESSED.

I hope everyone has a wonderful and blessed Christmas. Thank you again for your prayers!

God bless,

Donna :)

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Comment by Grace on February 7, 2011 at 10:07pm
What a relief! I hope you blessings have continued into the new year.
Comment by Sylwia Antkowiak on December 16, 2010 at 12:10pm

I am so happy for you and Jonathan..It's truly wonderful news.

I would also like to thank you for your kind words to my last post.

Merry Christmas

Comment by Linda Burke on December 15, 2010 at 11:56pm

Wow.....those folks who slam teens for their 'bad attitudes' and selfishness should meet this crew.  Of course, the girls soccer and basketball teams must be celebrating that Jonathan's 'great looking hair' will be gracing McKinney Boyd's halls in short order.

Once again, so thankful for such good news for your family.....talk about answered prayers!  ;~D

Comment by Cheryl Biermann on December 15, 2010 at 8:36pm

Thank goodness.  What a blessing Jonnathan's friends are! 

Comment by Dana M Simone on December 15, 2010 at 6:03pm

Wonderful news, Donna!  And kudos for the great job they're obviously doing at Jonathan's high school.  Merry Christmas!

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.
  
• • • • • • • • • • • •
  
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.
  
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