The Foundation for Children with Atypical HUS

So, my beautiful child was watching Oprah one day and saw a show about "giving back" to your community and decided after what she has been thru, She would like to donate blood. She realizes she would not be alive today if people wouldnt have taken time out of their busy lives to do this simple yet life saving act. (Lydia is 10 yrs old)

Obviously this cant fly...but what could is the idea of doing something great with your life/time. We contacted the Red Cross and together decided a great thing for Lyd to do would be to host a drive. It was on December 21, 2009...the week of CHRISTmas. It ran from 12-6. Since we were a first time gig, they could only staff us with minimal workers and left the advertising up to me. I advertised on Facebook, and put posters up at area businesses (didnt have her face for this drive...will use her face for upcoming one in February, just had printed in honor of Lydia Goble.)

We "sold out" the event!!! Together we saved 243 lives. What was so kool about it is that the majority of donors were "first time" donors OR people that havent given blood in the last 10-15 years. We had to turn people away at the end as we ran out of bags to collect the blood in. We made an impact and it felt great. It was alot of work...we did the food, advertising, messages, encouragement, and supplied all the manpower for this event with "our people". Ask anyone who was there that day, and they will tell you it made them feel AWESOME to do something for others...we totally gave the gift of life that monday, dec 21 and enjoyed EVERY single minute of it. Was it alot of work...Yes. Was it so very rewarding...heck YES!! Are we all gonna do it again...YES, February 23 is our next drive.

I wonder.... would we as a family ever have had the opportunity to make a difference in this way if our lives hadnt been touched by aHUS....would our friends have ever felt the need to give blood or the desire to help out in such a way? Dont get me wrong, we pray for a cure for this disease EVERYDAY (sometimes multiple times a day!) and wish that our family and yours had never heard of it....but, my child (tears in my eyes) has made such a huge difference in others lives because of this disease and I am so proud of her. =)

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Comment by Cheryl Biermann on December 26, 2009 at 12:23pm
Totally awsome, what a Christmas gift you all have given people and their families! We are so proud of you, and very happy that it was such a positive experience...RC won't forget you!
Comment by Linda Burke on December 25, 2009 at 10:57pm
We're so proud of Lyd, of the wonderful example set by her faith-filled mother, and of all your terrific family and friends who so generously donated their time/talents/resources during a busy holiday season! Kudos and big hugs to you all...and to all the brave and beautiful aHUS kids and families who make the MOST of every day together!

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...

Help us fight the battle

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
For pearl bracelet orders, please allow extra time for processing checks.



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