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Melanie Mergentime
- Female
- Syosset, NY
- United States
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Melanie Mergentime's Page
Latest Activity
Hi Amy,
So nice to hear from you. Acutually our daughter Sammi died this past June of ahus. I plan on putting up her story I just have to muster up enough strength to write it. Sammi had a double bacterial pneumonia and was diagnosed with strep pne…
Profile Information
- Birthday
- June 27
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Melanie Mergentime's Photos
Comment Wall (10 comments)
- At 8:13am on February 5, 2010,
Lisa L. Brown said…
- I am very sorry to hear the loss of your child. I hope they can come to some better understanding of this disease. I know it is hard, but remember to take care of you during this time.
Lisa
- At 10:22am on December 9, 2009,
Heather Still said…
- Hi Melanie. The loss you have suffered is unimaginable to me and I'm sorry doesn't seem like enough. Your family is in my thoughts and prayers and I hope that you find some connections on this website to help you along.
- At 2:12am on November 30, 2009,
Sara Palmer said…
- Hi from the UK Melanie and welcome to this wonderful site where others totally understand the effects of aHUS on our children and encourage you to share your loss and find support in others. I lost my beloved Son Jack, Aged 6, just over 2 years ago now to aHUS after he developed an infection in his treatment line which led to a catasthrophic chain of events which was just to massive for him to fight. I imagine you are still in that thick fog right now, existing minute to minute trying to come to terms with your loss. Please talk to us when you are ready and able.
- At 10:28pm on November 29, 2009,
Linda Burke said…
- All the "I'm sorry"s in the world couldn't express the depth of your loss or the sadness this community of aHUS families feels in the shadow of your grief. In the 5 months since Sammi's death, you've probably been given much advice and probably several books about the loss of a child. When our son Hunter died in May 2008 at age 5 and a half from an attempted dual organ transplant, we gleaned little comfort from traditional grief therapy sources. After website member Tony Silva lost his sweet baby Noah, he heard a story meaningful to his family and shared the story on this website. I had never heard the story of the dragonfly and the water beetles before, but thought it was truly lovely. Perhaps you'd care to type "dragonfly" in the search bar and read it.....
Wishing you strength and peace, Linda
- At 11:54am on November 29, 2009,
Bill Biermann said…
- Wecome to the family, Melanie. God bless you and your beautiful little angel, Sammi. My heart aches for you. Some of us have lost children to AHUS and some of us have lost a child through another way...this is a very good site to gain comfort and hope from, anything at all you'd like to share about Sammi, or any questions, comments about anything, please feel free to express here. God Bless you. Cheryl and Bill
- At 11:31am on November 29, 2009,
Amy Swarbrick said…
- I am so sad to hear about your daughter. My heart goes out to you and your family. There are several people on this site that have also lost a beloved child due to ahus. This website has been a great support for me and I hope you find it helpful too. That's great news your son does not have the mutation. Still haven't had Cadance tested but are praying everyday she doesn't have it. Hope you continue to visit the site and share your story.
- At 11:02am on November 29, 2009,
Svetlana Finley said… - Hi, Melanie,
Welcome to our AHUS family ;-) I love it your picture of Sammi,
- At 11:50pm on November 28, 2009,
Linda Burke said…
- Hi Melanie,
Thanks for adding the cute photo of Sammi- love the spirit! Here at the interactive website of The Foundation for Children with Atypical HUS, we share information, inspiration, and insights among those who deal with this rare disease. There are 5 website Members from the NY towns of Madison, Rochester, and Buffalo and all have different experiences and aHUS circumstances (the search bar is above the cute colored 'bubble faces'). We look forward to your questions/comments and to hearing your story.
- At 11:35pm on November 28, 2009,
Donna Kolp said…
- Welcome!!!
This is a fantastic site, and if you have any questions, please feel free to ask!!!
God Bless,
Donna
- At 10:43pm on November 28, 2009,
Amy Swarbrick said…
- Welcome to the sight. I also have a 3 year old daughter. Her brother Brody (19months) was diagnosed with ahus in March of this year. He also has a mutation in factor H. Am looking forward to getting to know you and your family.
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 "About aHUS" tab 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 2010 genetic testing and treatment.
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 "About aHUS" tab 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 2010 genetic testing and treatment.
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...
• • • • • • • • • • • •
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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