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Kerri Grey
- Female
- Victoria
- Australia
- Blog Posts (13)
- Discussions (47)
- Events
- Photos (308)
- Photo Albums (8)
- Videos
Kerri Grey's Page
Latest Activity
Michele Haymes commented on Kerri Grey's blog post No Title"Hi Kerri, apologies but I tried to respond to your email introducing yourself, but it appears that my reply email went into the Bermuda triangle of the Internet world. I've just tried to add you as a friend so I can send you messages. Would be…"
Cheryl Biermann commented on Kerri Grey's blog post No Title"Hi, Kerri! I bet they were all happy when you brought Ollie home! Let them help! "
"congratulations! and thanks for sharing the precious pictures! "
Linda Burke commented on Kerri Grey's blog post No Title"Thanks for adding the adorable photos, Kerri. - don't know how you've had time to catch your breath! Ollie seems like a handsome love.....hope he's settling in well and letting you rest a bit. So happy for your clan...."
Kerri Grey posted a blog postHi all, sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps…
Hi all,sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps and to receive IV anti's til negative cultures come back for line infections/meningicoccal etc!!!On the home front 8 days ago on the 28th of January we welcomed our 5th child into our family - a little boy named Oliver (Ollie). Unfortunately i ended up having an emergency c-section so recovery is a…See More
Kerri Grey left a comment for Michele Haymes"Hi Michele, Linda just told me about you joining this foundation and that you are also from Melbourne!!! I too am from Melbourne and my son Ashley has attended the children's hospital for the past 3 years with aHUS. How long ago was your…"
Linda Burke left a comment for Kerri Grey"Hi Kerry,
Hope that all is getting settled on the home front with new baby Ollie...can't wait for you to post some of his adorable baby photos here! How's Ash (and the other siblings) reacting to the new bundle of love? We just…"
Cheryl Biermann commented on Kerri Grey's blog post No Title"Hi Kerri!
Great news, but maybe we can make it better? Nathan has a lot of upper-respitory problems, but when he had kidneys, his runny nose would become a cough, then croupy cough, then pneumonia...over the years we began using…"
Kerri Grey posted a blog postHi all, well it has been quite a while since i have updated on Ashley. I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly…
Hi all, well it has been quite a while since i have updated on Ashley. I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly dose of Solaris!! As has always been the case his Potassium levels can still cause issues, his hb levels still require erythrpoietin injections and his ldh levels have still never been in the "normal" range. However, his creatinine, platelets, urea etc all tend to be borderline normal, which is all…See More
Kerri Grey commented on Linda Burke's blog post aHUS Family Conference - A Brief Message"yay!!! i look forward to being able hear all about it!!!"
Kerri Grey commented on Bill Biermann's blog post FDA Approval for Soliris (Eculizumab) REJOICE !"Thanks Cheryl... will keep you all posted on out progress here!!!"
Profile Information
- Birthday
- March 13
- 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 Awaiting Results
Kerri Grey's Photos
Kerri Grey's Blog
Hi all, sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps…
Hi all,
sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps and to receive IV anti's til negative cultures come back for line infections/meningicoccal etc!!!
On the home front 8 days ago on the 28th of January we welcomed our 5th child into our family - a little boy named Oliver (Ollie). Unfortunately i ended up having an emergency…
ContinuePosted on February 5, 2012 at 12:03am — 4 Comments
Hi all, well it has been quite a while since i have updated on Ashley. I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly…
Hi all, well it has been quite a while since i have updated on Ashley. I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly dose of Solaris!! As has always been the case his Potassium levels can still cause issues, his hb levels still require erythrpoietin injections and his ldh levels have still never been in the "normal" range. However, his creatinine, platelets, urea etc all tend to be borderline normal, which is…
ContinuePosted on November 24, 2011 at 12:30am — 1 Comment
thought i would update you all on a little of our life as whole, not just Ash!!! We found out a couple of weeks ago that i am pregnant again!!! Yes again... yes that makes 5 kiddies!!!! This was not…
thought i would update you all on a little of our life as whole, not just Ash!!! We found out a couple of weeks ago that i am pregnant again!!! Yes again... yes that makes 5 kiddies!!!! This was not a planned pregnancy so i have spent most of the last couple of weeks trying to get my head around the idea, which i think i am finally starting to do!! The funny side to all this is that Jason went to see the specialist in March to organise to get the snip done and has been on the waiting list…
ContinuePosted on May 26, 2011 at 6:41am — 4 Comments
Tornado's
Just wanting to say that i am thinking of my friends in America who have been touched by the recent tornado's. I hope you are all safe, you are all in my thoughts and prayers!!!
Posted on May 1, 2011 at 11:20pm — 2 Comments
Comment Wall (10 comments)
- At 10:01pm on February 4, 2012, Linda Burke said…
Hi Kerry,
Hope that all is getting settled on the home front with new baby Ollie...can't wait for you to post some of his adorable baby photos here! How's Ash (and the other siblings) reacting to the new bundle of love? We just welcomed a fellow Aussie mom from Australia - please give a shout out to Michele from Melbourne when Ollie's napping...
- At 9:27am on February 3, 2011, Linda Burke said…
- Hearing of the cyclone in Australia, I was concerned....hope you and all family/friends are safe and sound!
- At 9:35am on December 16, 2010,
Wendy Flinn said… Happy Holidays! Wishing you a fun and healthy holiday season!
- At 11:20am on October 19, 2010,
Svetlana Finley said… - Hi, Kerri
Just wondering how your daughter is doing? Did they find out what is wrong with her joins?
- At 9:06pm on May 26, 2010, Wendy Flinn said…
- Your kids are so cute. I think it's wonderful that you did a funderaiser for kids with aHUS. I hope it went well. Your right about noone knowing about this disease. When people ask me what my son had I always sigh and think how do I explain it. I hope your son is doing well. His eyes are so blue.
- At 10:45pm on February 24, 2010, Linda Burke said…
- Sending along a hug as you ride a rollercoaster of emotions....sending prayers that Ash's treatment plan with Soliris will soon yield improved lab numbers. Hang in there!
- At 8:25pm on February 24, 2010,
Grace said…
- It is so great to see the joy in the faces of all your beautiful children! I hope Ashley's aHUS remits soon!
- At 11:16am on February 15, 2010, Svetlana Finley said…
- You have awesome family!!! Love your kids pictures ;-)
- At 8:06am on February 12, 2010,
Phyllis Ann Talbot said… - Hi there Kerri - i'm a little late but wanted to welcome you and tell you good luck with the Soliris! By the way - the new pics are adorable!!! what a cutie!
- At 10:31pm on February 9, 2010,
Jodi Kayler said… - Hi Kerri, In response to your question on the blog. Our doc thinks he can go a few years at least--maybe into his teens. His creatinine hangs at 1.5 but all his electrolytes have continued to stabilize. Coen only had plasma exchanges the first year of his diagnosis. Daily exchanges would only keep his platelets stable but not allow his kidneys to function. We finally figured out that constand weekly doses IVIG did help, and that is what he was on for 4 years. Last year, his relapse was so severe that they tried plasma exchanges and IVIG, with no luck. You are very lucky that you don't have to worry about insurance coverage! So far we haven't had any hassles with it but I'm always worried we may in the future. Keep us posted on the Soliris. I typically post Coen's updates in the Soliris forum.
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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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...
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