The Foundation for Children with Atypical HUS

Was thinking that we needed a place to put special requests for prayer for our little ones, ourselves, our outlooks, etc.

I know for me personally that it is so difficult to understand the how's and why's-- It is even difficult for me to pray about it alot of the time. I find that I'm unsure WHAT to ask God for, or go through stages where I am so angry I don't know how to pray at all.

With that being said, I still believe that God is ever-present, answers prayers and is still in the miracle-business!

Please feel free to post any prayer requests for you, your child or anything else that you have going on AHUS-related or not!

There is no one else that understands what we are going through like the other parents who are experiencing the same things. When we can't or don't know how to pray ourselves - there are others that can "stand in that gap" for us.

Thanks so much!

Christy

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Prayers for Alyssa's Transplant Surgery:


Loving Father, we entrust Alyssa to your care this day; guide with wisdom and skill the minds and hands of the medical people who minister in your Name, and grant that all effects of illness be removed, that Alyssa may be restored to soundness of health and relearn to live in more perfect harmony with You and with her beloved family and friends. Amen





Prayers for Jose's and Brandi's Post-Transplant Recovery:

Immersed in God's healing love, you are renewed in body and spirit. We celebrate that your bodies are healed and spirits lifted through the power of God's love as divine order blesses every function of your bodies. May the Light of Love and Healing Energies come to you, surround you, and flow through you. Amen
Cheryl Biermann just added this, so I thought I'd repost it here:
"Maria has just added the information to her profile that Jose has to have another surgery for a leak somewhere, she doesn't know where. Jose's numbers continue to look good in spite of this.



Please join me in lifting Jose up in prayer, that they find the problem quickly and the surgery goes well."

As Hyde's biopsy date approaches (3/13), we ask God once again to bring comfort and good news to the Talbot family.  They have been stalwart and compassionate people, Lord - driven not only to be advocates for Hyde's aHUS issues, but to extend their loving arms and  volunteer efforts to all who deal with health issues,  through their organization of the 'Hike for Hyde' which benefits their local hospital as well as aHUS research.

Experienced doctors, skilled nurses, and the combined expertise of technicians - may they combine into a triad that is blessed by you, Lord, as they seek answers and provide care to their patients.  As Hyde is supported by his loving family and friends, may You wrap them all in love, illuminate the situation with knowledge, and provide positive outcomes for Hyde's continued improvements in health.   AMEN

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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.
  
• • • • • • • • • • • •
  
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.

  

  
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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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