The Foundation for Children with Atypical HUS

Hi everyone!

I know it has been awhile since I wrote about what has been going on in the life of Jonathan :) Jonathan started his Senior year of high school in late August, and is loving it! He is now going all day, except for when he gets his plasma transfusions, which is 3x a month. According to his teachers, he is an excellent student, doing well, and I was told that he is VERY social. LOL.....He actually told me he acts differently around us ( Mom & Dad). Well, I knew that :) He turned 18 on Sept. 16th.....That day was bittersweet for me. There was a time that I could not bear to look into the future because I was scared. It wasn't that I felt old, it was the fact that he was celebrating a milestone. That weekend he went to his first Homecoming dance! On a date and all!!! All I can say is WOW......He went with a group of friends, and had a blast.

He is also involved in Partner's P.E. at school to help the mentally challenged understand the rules of sports. Since Jonathan was never able to play, he is able to help those who can play, but just don't understand. This spring he will be involved with the special olympics, as a helper :) I am so very proud of him, and what he is giving back to others.

As I mentioned earlier, we are still doing the plasma transfusions. I am still doing Home Hemodialysis, 5 days a week, 2 hours a day. Jonathan looks and feels great, and his labs are awesome :) I recently was asked to demonstrate to some Nephrologists in the Dallas area, how the Dialysis machine is set up, and show how it is all done.

Graduation is approaching......Announcements, Cap and Gowns, Senior Portraits....I am overwhemed. I am thankful that Jonathan is able to participate and enjoy this monumental time in his life. If only I can stop crying.....

Hope all is well with everyone. We continue to pray daily for all those who are affected by AHUS, and for strength. Lord knows we all need it!!!

Love and Blessings,

Donna

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Comment by Jessica Olivia Frysz on October 1, 2010 at 9:07am
Donna congrats on your accomplishment! 18 is a big step and even bigger is the senior year in high school. Yea I get the exact same comments, that I'm a social butterfly. I can't help being a social butterfly and also an email queen, I'm just easy to get along with I guess.
Comment by Linda Burke on September 28, 2010 at 10:46pm
This is one of the few times that one can say 'awesome' in the truest meaning of the word. Stories of Jonathan always seem full of spirit and hope....something we can all learn from as we face our own family challenges. Here's to savoring the many events special to Senior year...while Jonathan looks forward to a bright future!
Comment by Grace on September 28, 2010 at 9:37pm
How wonderful to have normal, exciting things to look forward to and witness the fruition of! I love that Jonathan is working with Special Olympics and sharing his love of sports.
I hope senior year is everything it should be and all of you enjoy every minute of it!
And hooray for you, home dialysis expert and spokeswoman!

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.
  
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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.

  

  
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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