Tuesday
Sep092008
Help.
Tuesday, September 9, 2008 at 12:25AM | Mr Lady
Things I just found out today:
Help me?
No. Well, here's someone you actually can help, who really needs it. My friend Tiff @ Three Ring Circus, she has a little girl and....oh, who am I kidding? Veronica @ Sleepless Nights said it best; I'll just cut and paste. Read on, take a minute, sign the petition if you can. Which, if you don't think those things make a difference, they do. The CEO of the International Pemphigus Foundation found Veronica's post, forwarded it to the blistering Specialist that Ivy saw way back in January, who just happens to be on the board of the Pemphigus Foundation. These things work, they make a difference, they may just help a beautiful little girl and her family. (Edited to note: From the time I hit publish and went to bed until the time I got up this morning, the petition worked. She's getting the treatment. Thank you all so so so much.)
Cut and pasted from Veronica's blog, with consent and thanks...
Tomorrow, maybe, we can talk about my mother in law.
- My mother in law is coming.
- In 8 days.
- And is planning on staying with us.
- For two and a half weeks.
Help me?
No. Well, here's someone you actually can help, who really needs it. My friend Tiff @ Three Ring Circus, she has a little girl and....oh, who am I kidding? Veronica @ Sleepless Nights said it best; I'll just cut and paste. Read on, take a minute, sign the petition if you can. Which, if you don't think those things make a difference, they do. The CEO of the International Pemphigus Foundation found Veronica's post, forwarded it to the blistering Specialist that Ivy saw way back in January, who just happens to be on the board of the Pemphigus Foundation. These things work, they make a difference, they may just help a beautiful little girl and her family. (Edited to note: From the time I hit publish and went to bed until the time I got up this morning, the petition worked. She's getting the treatment. Thank you all so so so much.)
Cut and pasted from Veronica's blog, with consent and thanks...
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.Sign the Petition
Tomorrow, maybe, we can talk about my mother in law.
Reader Comments (26)
2 and a half weeks with your mother in law? Thank god you have a blog.
Thankyou so much for posting about Ivy as well.
Veronicas last blog post..http://somedaywewillsleep.com/?p=935" rel="nofollow">Astounded
Oy, two and a half weeks? Could you spring for a cheap hotel? Do you have a spare fridge box you could put out on the porch?
(going over to sign petition now)
Procrastamoms last blog post..http://feeds.feedburner.com/~r/Procrastamom/~3/386376950/Procrastamom" rel="nofollow">Links for 2008-09-07 [del.icio.us]
I saw this somewhere (?) a few days ago and signed the petition. How could you not? I'm so glad to hear that "the powers that be" have been alerted to Ivy's case. I hope that she gets the treatment she needs.
You, on the other hand, are going to need a whole different sort of treatment. Eeek.
Latte Mommys last blog post..http://lattemommy.blogspot.com/2008/09/love-is-in-air.html" rel="nofollow">Love Is In the Air
Wow... why would they deny treatment? There's got to be an explanation for this... if it isn't a good one, Sleep Deprivation Ninja is going to have to take a trip to Australia.
Sleep Deprivation Ninjas last blog post..http://feeds.feedburner.com/~r/SleepDeprivationNinja/~3/387406388/badass-daddy-blogger-calendar-who-rocks.html" rel="nofollow">Badass Daddy Blogger Calendar + Who Rocks the Ninja Socks?
well done for posting this.
I think you should have a wee look at Tiff or Veronica's blogs for an update !
Xbox4NappyRashs last blog post..http://xbox4nappyrash.blogspot.com/2008/09/bushel-and-camels-back.html" rel="nofollow">The bushel and the camel's back
Want to compare in-law stories? I'll go first. I've got a doozy up on my blog today.
Now, I'm off to sign the petition.
SciFi Dads last blog post..http://feeds.feedburner.com/~r/TalesFromTheDadSide/~3/384066989/brand-new-low.html" rel="nofollow">A Brand New Low
Saw this a few days ago on xbox4nappyrash's blog. Blogged for the cause, immediately.
You guys are good eggs.
I'm so sorry about your MominLaw.
(did that sound convincing? because you KNOW i'm actually thinking, "Sweet!! This is going to make some great reading!"
sherendipitys last blog post..http://sherendipity.com/blog/archives/699" rel="nofollow">Sounds from the love couch
Wow, that poor little girl - thanks for posting the petition!
And, bless you - I'm sure that these next few weeks will be a trial but we're here for you! :)
calicobebops last blog post..http://calicobebop.blogspot.com/2008/09/hannas-visit-and-some-people-watching.html" rel="nofollow">Hanna's Visit And Some People Watching
Wow. Unbelievable to deny treatment for any reason...went off right away to sign!! Keep us posted on how things develope. Ivy will be in my thoughts...
Wooo the MIL...sounds like "good times," for me the cyberstalker ;)
Darlas last blog post..http://dmmos.blogspot.com/2008/09/t-o-u-c-h-d-o-w-n.html" rel="nofollow">T-O-U-C-H-D-O-W-N
(delurking...)
She got it!!
http://www.mythreeringcircus.com/2008/09/approved
Totally made me cry - signed of course - looks like they're getting a great response!
Happy Hour Sues last blog post..http://happymealsandhappyhour.blogspot.com/2008/09/tweeting-vmas.html" rel="nofollow">Tweeting the VMA's
Signed, sealed and delivered. I only hope they change their minds.
Shutter Bitchs last blog post..http://shutterbitch.wordpress.com/2008/09/08/heavy/" rel="nofollow">Heavy
Two weeks? I like my MIL and could never take that. I signed the other petition, but I think you need another to limit the length of time an in-law can stay at your house.
Jims last blog post..http://h31n0us.blogspot.com/2008/09/profile-of-lame-guy.html" rel="nofollow">Profile of a Lame Guy
Oh, the poor little thing! Does it matter that we aren't Australian in regard to signing the petition?
Natalies last blog post..http://www.startingfromhere.com/?p=152" rel="nofollow">Into Life
I am relatively new to the blogosphere, and am amazed at the power of the people who are out there. I found Tiff's blog because of your blog awhile back, and have been following her story. I am so happy they are getting the treatment she needs.
And regarding the MIL, stock the bar and buy the chocolate. Lots and lots of chocolate.
MidLifeMammas last blog post..http://mkosboth.blogspot.com/2008/09/alls-well-that-ends-well.html" rel="nofollow">All's well that ends well...
I would be interested to hear the reason the treatment is denied... did she post anything about that?
But barring her going all Peter Petrelli I can't imagine any justification. Glad it worked out. (Little Kids will get ya every time.)
I am so glad about her getting the treatment; I am pretty 100% sure that it was my comment on the petition that swayed them in her favor. I think I said something along the lines of," I think it is disgusting, blah blah, I thought America cornered the market on being heartless bastards but apparently not." As for the mother in law? Well. I have a really heavy pillow you can borrow. They don't leave marks. No evidence.
Koris last blog post..http://korij.blogspot.com/2008/09/it-would-have-been.html" rel="nofollow">It Would Have Been....
2 weeks? With your MIL? I think you might need the IVIG. Apparently there is a MIL clause in the criteria!
1000 blessings to you for posting this for ivy and I. Biggest, sloppiest smooches! MWAH!
tiffs last blog post..http://www.mythreeringcircus.com/2008/09/approved/" rel="nofollow">Approved!
Yay for Ivy! Boo for mother-in-law!
Kates last blog post..http://katescrazylife.blogspot.com/2008/09/three.html" rel="nofollow">Three
Good for Ivy. Beautiful little girl and a horrible thing to have to deal with.
Where is your MIL going to sleep? Do you have the room? Mine is coming after Christmas, but I adore mine. She's never any trouble. I'm very lucky.
One Moms Opinions last blog post..http://onemomsopinion.blogspot.com/2008/09/one-weekend-another-project-down.html" rel="nofollow">One weekend, another project down
Dude! WE DID IT. She's getting her treatment!
Yay us!
Now, I know you have to act as hostess and all, but you may want to consider a trip to Michigan. MommyTime and I are happy to put you up.
Rees last blog post..http://feeds.feedburner.com/~r/hotfessional/KKFw/~3/386875268/" rel="nofollow">Maid of Honor - Past in Polaroids 5
so glad the petition worked!!!
now, about the MIL...
pgoodnesss last blog post..http://pgoodness.com/2008/09/06/soccer-it-to-me-baby/" rel="nofollow">Soc(cer) it to me, baby!
You're killing me. I read and I signed.
Chriss last blog post..http://www.rudecactus.com/2008/09/this_is_not_a_political.html" rel="nofollow">Palin Comparison
The power of positive thinking and the internet! I'm so glad Ivy is getting the treatment she needs!
Melanie @ Mel, A Dramatic Mommys last blog post..http://lacostamom.blogspot.com/2008/09/need-your-help.html" rel="nofollow">Need Your Help!
I saw this on Xbox's blog last week.. I totally signed it.. way to go for getting the word out there.. so excited to hear she is getting the treatment!!!!
Kims last blog post..http://www.joggingincircles.com/journal/2008/9/10/wordless-wednesday-2009-super-bowl-ring-contenders.html" rel="nofollow">Wordless Wednesday - 2009 Super Bowl Ring Contenders
Thank you so much for posting this link. I know she's got it, but I signed the petition anyway.
Good luck with your mother in law. ;)
Once upon a time, Jaina wrote..http://girl-with-the-camera.blogspot.com/2008/09/prayer-request.html" rel="nofollow">Prayer Request