The Foundation for Children with Atypical HUS


As I sit here and reflect back on my son's journey, I can say that I am
truly blessed. Next Friday, Jonathan will be graduating from high school. It is
extremely bittersweet for me. I think back when times were tough, and when time
stood still. Those dark times, alone in my thoughts, asking God, please, please,
give him a chance to live and shine. I remember a particular time when Jonathan
was in a coma, and the Doctor's telling me to keep talking to Jonathan because
he can hear you. I whispered in Jonathan's ear, "We have so much yet to do. I
want for you to shine at school. I want for you to love someone so bad it hurts.
I want for you to fall, but get right back up. I want for you to graduate from
high school". He heard me that day, and so did God. I have watched my son
struggle with the cards he was dealt. I have heard him pray to God, to help and
bless those around him, but unselfishly, not asking for anything for himself. I
have watched him become a mentor at school for those facing hard times. His
heart is pure.  Jonathan has become an extraordinary man, not by my hand or the
hand of his Dad's, but by his ability to love and shine. It is a milestone for
any child to graduate, but when you never thought that this day would ever come,
it is a miracle. That is my son...a Miracle.


 

 




ONE of Jonathan's Senior pictures! :)

 


 

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Comment by Wendy Flinn on June 3, 2011 at 11:17pm
Congratulations to your son! May he have a fulfilling and successful future with whatever he chooses to do.
Comment by Grace on June 2, 2011 at 9:06pm
Congratulations to Jonathan and Jack! Graduating high school is such a wonderful milestone, especially when it hasn't been easy or certain. And congratulations to you, Donna and Dana, and your entire supportive family--this is truly a time to celebrate!
Comment by Linda Burke on May 30, 2011 at 9:53pm

One of the biggest blessings in the life of a child with aHUS is having a loving, tenacious family that will fight for every opportunity for their son or duaghter's strength and joy.  Your strong advocacy and gifts of hope and encouragement have helped form a positive, remarkable son....

May Jonathan's wonderful sense of humor and can-do attitude continue to shine for all to see - a beacon that shows others what great things faith, perserverance, and love can accomplish!  Here's to a future filled with wonderful things in store!

Comment by Amy Swarbrick on May 29, 2011 at 8:35pm
Congratulations to Jonathan and your family. You have paved the road so many of us parents of young children with ahus still must travel down. It's an amazing feeling to know there are things like high school and college graduations in our children's future. The road may be ruff but it is possible!
Comment by Dana M Simone on May 28, 2011 at 10:55am
Donna, boy do your words resonate! Jack graduates next Friday, too!  His last day of school was Thursday, and it was one of the few days he made it in. His entire senior year he has been home tutored, since his switch from peritoneal back to hemodialysis, and a slew of hospitalizations and other sidetracking. He is enrolled in our local community college (Health studies and then nursing) for the fall. I envision that you and I will be loaded with boxes of Kleenex Friday night.  Please give our congratulations to Jonathan!
Comment by Cheryl Biermann on May 27, 2011 at 9:38pm

Congratulations to you all!  What a great picture.  I look forward to hearing about Jonathon's post high school plans, is he planning on college?  He is so close in age to my twins who have just finished up their freshman year in college.  Maybe he is a bit like they were, kind of disbelieving they were entering the adult world

Good luck in your future Jonathon, I know you'll succeed because I know how hard it was just to get to this point, you've shown perserverance, diligence,  and hard work among all the qualities your mom mentioned.  Congratulations mom and dad too,you've also had a hand in the wonderful yougn man he has become.

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.
  
more factoids...

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19 Olde Colony Lane
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