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Martha L. Rusche and Cassie are now friends Sep 10, 2011

Svetlana Finley commented on Cassie's blog post 'update on evan'

That is great news ;-)

Jan 22, 2010

Cheryl Biermann commented on Cassie's blog post 'update on evan'

Wonderful! thanks for the update, Cassie.

Jan 22, 2010

Amy Swarbrick commented on Cassie's blog post 'update on evan'

Great news! Keep us updated...it's good to hear the good stuff:)

Jan 22, 2010

Linda Burke commented on Cassie's blog post 'update on evan'

Hooray for the great news, Cassie!

Jan 22, 2010

lisa ann peterson commented on Cassie's blog post 'update on evan'

glad to hear that evan is doing well

Jan 21, 2010

update on evan

hope everyones holidays were great..i havent been on here in such a while i figured i would just write a short little update on evan...we have been so lucky that evan has been completely healthy since we came home from the hospital in september..he is going every 4 weeks now to the doctors..he has made it threw his first ear infection, stomach flu, cold, and a viral infection..and nothing has effected him at this point..we are so blessed....thank you lord...hope all of your children are doing…See More

Blog post by Cassie Jan 21, 2010

5 Comments

Cassie updated their profile Nov 22, 2009

Cassie updated their profile photo Nov 22, 2009

Christy left a comment for Cassie

Cassie--Evan is such a cutie--beautiful eyes! Looking forward to talking more with you ; ) . Hang in there mama!

Nov 6, 2009

Christy commented on Cassie's blog post 'No Title'

Woohoo!!!

Nov 6, 2009

Melissa Hearn commented on Cassie's blog post 'No Title'

Splish Splash! Yeah Evan!!!!!!

Nov 5, 2009

lisa ann peterson commented on Cassie's blog post 'No Title'

that was chloes fav part of getting the dialysis cath removed she got to take a bath and thats also the nice part about a port a cath its under the skin and she is able to bathe in a full tub of water she loves it.. iam glad to hear your good news

Nov 5, 2009

Cheryl Biermann commented on Cassie's album

Cassie, is he always so content? What gorgeous eyes!

hospital(07/27/09-09/15/09)

Nov 5, 2009

Cheryl Biermann commented on Cassie's blog post 'No Title'

Yeah, Evan-We're all splashing in the water right along with you!

Nov 5, 2009

Linda Burke commented on Cassie's blog post 'No Title'

Now that's what I call a truly Happy Halloween! Best to you all !!!

Nov 5, 2009

Profile Information

Birthday: November 12

Do you have a friend or family member diagnosed with aHUS?: Yes

Are you medical personnel or an aHUS researcher with an interest in aHUS issues?: No

My child ( or myself as a patient) is best described as:: Tested but Results are Inconclusive

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Cassie's Blog

update on evan

Posted on January 21, 2010 at 9:55am — 5 Comments

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to…

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to finally enjoy his bath time Continue

Posted on November 4, 2009 at 10:09pm — 7 Comments

update on evan

it is going on 4 weeks since evan has been home. it is also going on 4 weeks tomarrow since he has had any plasmapheresis. all of his lab values are back to normal. drs just told us that most of his genetic testing has come back and thats negative..bad news is there is still no cause..they seem to think he is in that small percentage that are idiopathic..they really are not sure what to think because every test has come back negative or within normal limits..they say that he has almost all of… Continue

Posted on October 11, 2009 at 10:57pm — 7 Comments

Tomarrow evan turns 1 year old..how time flies..well since we have been home evan has been doing great..the last day he had his plasmaphoresis was monday sept 14th..he has never went this long…

Tomarrow evan turns 1 year old..how time flies..well since we have been home evan has been doing great..the last day he had his plasmaphoresis was monday sept 14th..he has never went this long without it..im so proud of him..all of his labs have been within normal limits..and off to hospital tomarrow for more bloodwork and to see if he needs phoresis or if he can make it another few days without..fingers crossed Continue

Posted on September 23, 2009 at 10:42pm — 8 Comments

Comment Wall (10 comments)

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At 12:12am on November 6, 2009, Christy said…: Cassie--Evan is such a cutie--beautiful eyes! Looking forward to talking more with you ; ) . Hang in there mama!

At 6:12pm on September 21, 2009, Heather Still said…: Glad to hear that Evan is home. We spent 13 weeks inpatient when Ryan was first diagnosed....the relief of being home is amazing. Just realized you are a NYS family....we're an hour east of Syracuse.

At 2:46pm on September 10, 2009, Scott Woodruff said…: Hey Cassie, how's things? I'm Linda and Sky Burke's nephew and cousin, respectively. Welcome to the network!

At 2:06pm on September 8, 2009, Cheryl Biermann said…: Oops, Cassie, I just saw from your profile that you are still awaiting test results...I guess that means they know it's Atypical HUS but not what causes it? Hope your experience so far hasn't been too awful.

At 2:04pm on September 8, 2009, Cheryl Biermann said…: Welcome Cassie, happy to meet you, did you put out a blog yet? I'm not very good at this computer stuff so maybe I missed yours. If not, please do, as we all look forward to meeting new people and their children and families!

At 12:13pm on September 8, 2009, Teresa G. Craig said…: Welcome! Terry (Linda Burke's sister)

At 12:40pm on September 7, 2009, Heather Still said…: Welcome to our network!!! Look forward to learning more about you and your family.

At 11:05pm on September 6, 2009, Amy Swarbrick said…: Glad you have joined. My 17 month old son was diagnosed this year. If you ever want to talk just let me know.

At 8:21pm on September 6, 2009, Linda Burke said…: Hi Cassie!
Welcome to the interactive website for The Foundation for Children with Atypical HUS. On the Home Page you'll find the link to www.atypicalhus.50megs.org which is filled with detailed information about aHUS. This site is a social network where patients, families, friends, and researchers can share information and inspiration while providing support from others dealing with aHUS issues. We hope that you add questions and comments as you explore this website, and we look forward to your participation.

At 12:46am on September 6, 2009, Svetlana Finley said…: Welcome here!!!!

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Welcome to
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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 "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 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.

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