If you have a spare moment could you please go here and sign this petition? Pretty pretty please????
This post has been copied, with permission from Veronica at Sleepless Nights
Ivy is beautiful and Ivy is sick. Ivy is only 2.
And yet, at age 2, Ivy has seen the inside of a hospital more times than anyone should have to. Ivy has a rare immune deficiency IgG. Because of that, she has Pemphigus which is an autoimmune response to the IgG [please note, these are photos of Ivy's pemphigus blisters and they may be a little graphic for some people].
These are horrible conditions that no adult should have to deal with, let alone a child.
Ivy is currently on Prednisone and Mycophenolate to help control her symptoms and blistering; however, these drugs suppress her immune system, on top of the deficiency.
Ivy’s mum says “…she was never good at mounting a response to infection but the meds make it worse.”
She frequently ends up in hospital on IV antibiotics, just to help control the infection in her ears that never seems to completely disappear. She cannot be exposed to a simple virus in fear that it will land her back in hospital for days at a time.
She can’t go to the playground to play.
She can’t attend playgroup.
She can’t head to the supermarket with her mother.
She might never be able to go to regular school.
She is only 2.
However, there is a treatment that would give Ivy a good chance at normal life.
It’s called IVIG (intravenous immunoglobulin) and it is a transfusion of immune cells that would bolster Ivy’s own immune system and help her fight infections in a normal way.
Think about it, a chance at a normal life. A life that doesn’t involve frequent hospitalisations.
Unfortunately, the officials at the Australian National Blood Authority have denied the request for Ivy to have this treatment. This treatment that could very well keep her out of hospital. So far, all appeals have been in vain.
As Ivy’s Mum says on her website:
“My little girl is going to have a life of hospital admissions and illness, some chronic, some life threatening, because some guy in an ivory tower decided she could survive without this medication.”
How is this fair?
What if it was your child? What if it was your sister’s child? Do the rules change for daughters of the officials? How come someone with a big stamp gets to say yes or no to this little girl’s chance at a normal life?
It shouldn’t be like this.
All I am asking for is 2 minutes of your time. If you could just head over here and sign our petition, we might be able to get enough support to convince the National Blood Authority officials to change their mind.
Ivy is only 2. She deserves a chance to be normal.
Please, a minute of your time could make all the difference for Ivy.
If you have a blog and you would like to help spread the word, please feel free to copy this post and link back here to me at Sleepless Nights [so that I can follow where it has gone].
And if you would like to follow Ivy’s story (and that of her twin brother and older siblings) you can find them here, at My Three Ring Circus, written by the talented Tiff. All photos were taken by Tiff as well.
Caution !!!! You are now entering the zone of discontent...You will encounter copious quantities of Moaning, Whining and general Complaining for the next 34 lines…..
Rightio, now where was I? Something about not liking green snakes.
Mmmm, that is not exactly 100% true. I like proper real life snakes and some of them are actually green. It is the sweet variety of snake I am talking about and there are only green ones left.
*shoosh* I know that there are orange snakes in there as well but orange snakes are even worse, sort of a failed red snake if you like. I like to eat red snakes when I am writing and green and orange snakes just aren’t up to scratch. At All..Not by a long shot.
So I am sitting here trying to write a halfway decent post in a ’snake-free zone’ *sigh*
Recently I bought a new (2nd hand) computer and last weekend David and I changed them over. My old computer has been moved into David’s room and I am sitting here thinking that I am using a dud, *sigh* . Someone had nicked half the RAM and this computer is really fucking slow. I mean really, really, really fucking slow. To add insult to injury I had all my favourite blogs bookmarked and my screen looks very sad and empty without you all sitting up there in the tool bar distracting me keeping me company. I have you all in my google reader so don’t worry, I haven’t lost you, but but but…. this computer is soooo sloooow!!! *sigh*.
To add to my already high level of frustration the cd door thingy wont open, so I cant install the photo program that I am used to using Grrrr… I have installed picasa and I will use that for the moment but I don’t really like it. So if anyone out there knows of a good photo editing program that is also free, as well as easy to navigate can you please please please let me know..
Right what’s next on my list???
I told my husband last night that I wanted a divorce and he just grinned at me. Bastard never listens to a word I say.. Hmmphh.. Bloody Men…
I am going to boycott Target. Well I am at least going to avoid Target like the plague when I am out with Miss Amy.. They have changed the checkout system, so instead of standing next to an assortment of lollies,magazines and other useless crap at an individual checkout. You now have to line up in the toddler heaven, tantrum zone, ‘chocolate alleyway of doom’ before you even get to a cashier. Poor Amy had a lovely time playing with me in the toy section of the store and once Veronica and I had manouvered her toward the exit she just couldn’t understand why she wasn’t allowed to play with all the lovely chocolates conveniently placed at toddler height… Bloody Target…
You have now left the Zone of Discontent….
It is Miss Amy’s birthday soon and my lovely friend T, gave me her son’s castle and trampoline. It is really nice to know that these well loved and well played upon/with/whatever.. items are now being rediscovered and re-played with..
cheers Kim….
This week there is a winner YAY…
Xbox4NappyRash Says:
August 29th, 2008 at 4:01 am
Dried up mess from after you’ve done that like pottery stuff n’things.
Yep Martin that is exactly what it was… Yay!!! WooHoo!!!
I had been messing about with some raw clay and when I poured the wet clay out of the jar it left a really nice pattern. My first thought was to photograph it and use it as an idea for decoration. I really like the flowing almost feminine shapes that the clay trails have left on the jar. My next thought was hehe “this will make a great mystery object”
Ree came very, very close with her guess as well. in that Ree mentioned wet clay..
Slip - (isn’t that what it’s called? the stuff that potters use? wet clay?).
And if ever I need to produce an image of Kelleys frozen bladder I have one to hand.. Thanks Kel..
Cheers Kim xxx
OK mystery lovers what do you reckon this is?
You can click on the image to make it a bit larger if you like.. Have fun…
Wordless Wednesday shhh..
I am all cheered up now… thanks to lolcats.. and River emailed me the cereal killer..
Monday morning there was an amazing covering of frost on my car. Normally the frost is just a plain sheet of ice that I quickly remove with a bucket of water. This frost was just beautiful and I took heaps of shots before I reluctantly cleared the windscreen and drove to the pottery.
Enter the ninja….
I was at the beach this morning just before Dawn…
As I was leaving I glanced back.
I was walking to the car when these trees caught my eye. They reminded me of a quote by Kahil Gibran.
“Trees are poems that earth writes upon the sky,
We fell them down and turn them into paper,
That we may record our emptiness.”
There are many many more weekly winners at Lotus aka sarcastic mom’s. cheers Kim
Wordless Wednesday shhh….
Hyphen-Mama and Mrs C both gave me this award a while ago. There are heaps of people that I would love to give this award to but everyone seems to have it already. I knew that I should have passed it on straight away *sigh*
So if you are looking for new blogs to read both Mrs C and Hyphen are well worth a look. They are both intelligent and articulate women. Hyphen isn’t writing much at the moment but that doesn’t mean she hasn’t got stuff to say.
Mrs C touches on a broad range of subjects and quite often I will think about what she has written long after I have turned off my computer.
Look at this Virtual hug. This was also a gift from hyphen-mama. I would like to pass this on to three people . Veronica, Tiff and Xbox.
Marylin from a little space for me has put me in her top ten list of blogs that she reads every day.. Yay!!! Thanks heaps Marylin.
Here in no particular order are ten seven blogs that I read every day.
Bendy girl from benefit scrounging scum
Holly from june cleaver nirvana
Ree from the hotfessional
Fit Cat
Mrs C from Homeschool and etc
Julie from causes rats in lab cancer
Dawn from Kaiser Alex
*phew *I am all awarded out at the moment.. It seems like this post has taken weeks to write. I have heaps more awards to give to everyone but I can hear Kelley in the background demanding the ninja..
David is part of the backstage crew for his school’s Rock Eisteddfod performance this week and as such he needs to dress all in black. We were hunting about for a balaclava or something similar to mask his face when I remembered Kelley and The day of the ninja.. Yay thankyou Kelley you saved hours of angst.. Now Dave not only has the fun of being a part of the Rock Eisteddfod but can also runabout the place making ninja noises..
(which sound remarkably similar to meeeeeeefaaaarkingowwwwwtch)
I balance amazing cooking with indifferent housekeeping. Vacuuming is definitely bad for your soul. Unless someone else does it, then it is B.A.D for your ears as well... *sigh*
