Maya's Story
To start thank you for such a warm welcome. I have just discovered this website and I am very excited that I can share my story with people who will understand as they are going through the same what we have to go through. Our now 5 year old daughter Maya developed aHUS just over a year ago. She had multiple plasma exchanges but they did not really bring any results. In August last year due to constant high blood pressure and fluid overload her heart dilated and she ended up with pulmonary oedema. We have almost lost her.At that time she lost her kidneys but thanks God she is still with us. Since then she is on PD. Maya has Factor I aHUS and I am the carrier ( I never developed the disease). Now we are just hanging there waiting for more answers from the medical world. we are considering double transplant but also waiting for the results of Soliris trials. For now Maya's condition is stable, she is always happy with a big smile for everyone.
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Comment by Linda Burke on October 26, 2009 at 9:36pm -
Hi Sylwia,
Thanks for joining us on the interactive website of the Foundation for Children with Atypical HUS - we hope you find support and insight from other families dealing with aHUS. If you haven't yet checked the Foundation's informational site at www.atypicalhus. 50megs.com , you can find detailed medical information by clicking on the Links Box on this site's Home Page. If you or Maya's doctors would like the presentation slides from our recent conference at the University of Iowa, please feel free to request them from Foundation director Bill Biermann. We look forward to your participation on this site (love the great photos!!).
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Comment by Zofia on October 26, 2009 at 6:46pm -
Sylwia :))))))))))))Odezwij się , proszę, do mnie. Moja córa Ania tez choruje na HUS. Cudownie że tu jesteś:)
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Comment by Amy Swarbrick on October 24, 2009 at 11:37pm -
Glad you found the site. Everyday is truly a blessing with these kiddos! They go through so much but still manage to inspire us:) Welcome.
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Comment by Christy on October 24, 2009 at 3:33pm -
Welcome! So glad you are here...if I'm not mistaken you visited my little one's website a while back and left a sweet comment! This is a great place to connect with other families that are going through similar trials. Prayers to you, sweet Maya and your family. :)
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Comment by lisa ann peterson on October 23, 2009 at 9:08pm -
welcome my lil miss chloe is 5 years old too..this website has brought peace to me and really helped me to feel like i was no longer alone my daughter has had ahus with factor h mutation for a year and a half.. thank you for sharing your story and may this group of very strong parents bring you the balance they have given me..
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Comment by Cheryl Biermann on October 23, 2009 at 7:34pm -
I forgot to tell you, my husband is half Polish, the other half German, his grandparents were married over 85 years and lived to be 103 and 101! When Pope John Paul II was elected, they rejoiced!
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Comment by Svetlana Finley on October 23, 2009 at 5:22pm -
Thanks for sharing your story;-) I am glad that Maya is doing well we also waiting on Soliris, but Anna's kidney function is great, so we are waiting untill she will be 12 (7more month) to get her in trial, unless is pediatric will start sooner.
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Comment by Cheryl Biermann on October 23, 2009 at 5:10pm
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We are so happy to have you and Maya here as well, keep watching as we will soon have more information available.
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...
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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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