The Foundation for Children with Atypical HUS

Tonight is the eve of Ryan's 11th birthday. I go in his room as I do every night to tuck him in and I say "You know, it was about this time of night that you told me you were ready to come out of my belly and into the world." He hides his head and says "Yeah, that was before all of this." I asked him what he meant. He said "Before all of this." and pointed to all the scars on his chest and belly from catheters and g-tubes. Of course the tears were welling in my eyes already. So I explained that I am as happy now as the day he was born and that the scars mean nothing other than how strong he is. And then he says "You know, like Paxil, it causes heart defects and other problems." I had to hold my laugh in there.

The whole conversation has me an emotional wreck. But I do know that he is one tough little cookie and that I am so happy he will be celebrating his 11th birthday tomorrow. I thank the Lord for him every day and it is because of him that I appreciate all that life has to offer. There are so many people that don't appreciate the small things in life and I know that everyone on here does.

Happy Birthday Ryan. I love you buddy.

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Comment by Grace on April 24, 2010 at 9:23pm
What a special conversation. I hope Ryan had a fantastic birthday!
Comment by lisa ann peterson on April 23, 2010 at 1:10pm
thanks for sharing that touching story.... i always wonder what lil miss is going to remember and how she will remember it.... happy b day ryan and many more to come....
Comment by Linda Burke on April 22, 2010 at 11:31pm
May Ryan be blessed with a long healthy and happy life ! He certainly has been blessed with a strong and supportive mother who provides a ready smile and quick joke....until it comes to cleaning Ryan's room (lol-until it's my turn and the SkyGuy reaches that same 'messy boy' age!). Thanks for such a touching and heartfelt blog- hope Ryan has a wonderful birthday that kicks off a terrific year for him!
Comment by Phyllis Ann Talbot on April 22, 2010 at 9:35am
WOW - Heather - you are SUCH an amazing mom with such amazing kids! And apparently you are trying to pay me back for making you cry over Hyde's video b/c I'm sitting here crying like a baby - I wait (not in a rush AT ALL) for the days' when Hyde starts asking me these questions - be prepared b/c then I'll be coming to all of youfor help! Thanks for sharing and Happy birthday Ryan!
Comment by Amy Swarbrick on April 21, 2010 at 11:52pm
Eleven years.....how wonderful. I hope Ryan really does realize what an amazing and strong little boy he is. But he has a great mom that I am sure reminds him:) Many birthday wishes for a great year full of health and happiness!

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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