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 Petition
***UPDATE: As of 5pm today (my time) Ivy has been approved for her IVIG. Her doctors saw the petition and decided accordingly to fast track the decision process and approve her for treatment. I cannot thank everyone enough. Everyone who signed, everyone who blogged about it, posted it in forums, twittered and stumbled. I CANNOT thank you enough.
This blogging community is amazing. YOU are amazing.
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.
Comments
118 responses to “Ivy Girl **UPDATED”
Well that stinks. A lot. I suppose they put it down to ‘costs’ but surely the meds would be cheaper than frequent hospitalisations and sundry other meds etc. Poor baby.
I’ve signed the petition 😉
All I can say is thank you, from the very bottom of my heart.
tiffs last blog post..Captain Underpants
What a thoughtful post – really touching. I’ve been following Ivy’s struggles and if there is something out there that can help her, I am struggling to understand why they are not making it available! I have signed the petition.
I have signed it.
I may copy this, or I may write my own post. Either way, I’ll link here, too.
You rock, this is wonderful. Ivy deserves this. Tiff deserves this.
Thanks, V-Ronnie. 🙂
Sarcastic Moms last blog post..Do you put your shits on the table?
Thank you for sharing the story and giving us the link to the petition. It’s very sad and unfair.
Dinas last blog post..A Second Quote From One of My Favorite Australians
I’m so glad you’ve done this. That Ivy breaks my heart. Seriously, I’ve had fantasies for months of winning the California SuperLotto just to be able to help her. I’m going to copy your post and post it on my site, and will link back to you.
KATs last blog post..My Day at Disneyland, by Kat
Signed and twittered. Thank you.
Mr Ladys last blog post..Denver DNC Recap: The Important Stuff Part Two
Fabulous idea babe. My heart goes out to Tiff and the whole family. Damn the Government, these stories are far too common.
Kelleys last blog post..Chlamydia, Chlamydia, say have you met Chlamydia?
I have signed it, and so has J. Really hope this can help Ivy-girl get the treatment she needs so much.
A beautiful idea from a beautiful person. 🙂
[…] This post has been taken (with permission!) from Veronica over at Sleepless Nights. […]
Well done.
Xbox4NappyRashs last blog post..Where can you buy a vagina wig?
What a lovely thing to do! While the rest of us sit around and bitch and moan about the situation, you take action. You are a good friend to Tiff and little Ivy. I, too, thank you.
You are wonderful for doing this. I have copied your post and put it on my blog…. linking back to this post.
Thank you SO much for giving me something tangible to do to help Tiff.
Fes last blog post..Ivy Girl
XXXX Mum
frogpondsrocks last blog post..Ivy girl…
i am signing it now..
poor Ivy..
how are you?
Tazs last blog post..her favourite facial expression atm..
You rock!
Let’s hope this helps Ivy.
Von, you are a saint.
lceels last blog post..To, To, Tuesday
[…] would like to help spread the word, please feel free to copy this post and link back to Veronica at Sleepless Nights [so that I can follow where it has […]
You are a genius! And a damn wonderful person too!
I’ve written my own post (nabbed a photo) and linked back to you… lets hope this helps them see sense!
katefs last blog post..Blasphemy!
I have also signed the petition. It is very unfair that she is been denied this treatment.
I wish Ivy and her family all the best and hope for a positive outcome.
Oh Veronica! Thank you… THANK YOU for doing this. I’ve been so worried about Ivy for weeks (that’s how long I’ve been reading Tiff) and I’m so glad you’re being proactive.
Now… off to sign the petition!
Hyphen Mamas last blog post..Woody and The Beaver
Well done for doing this! I’ve signed the petition!
[…] Ivy Girl Copied with permission from Sleepless Nights. […]
bjorn just signed it too.. 🙂
Tazs last blog post..her favourite facial expression atm..
Hi,
I’ve signed the petition (off course) and put a link on my blog.
Good luck, I hope Ivy gets the treatment!
Anne
Annes last blog post..Ze doen dat hier ook (2)
This is so typical of bureaucracy however, I thought it only took place in the United States. I had a battle with my health insurance for my PET scan last month. (Ovarian Cancer)…
It’s a wonderful thing your doing and I’ll ask David to see if we can put this on our site http://www.grammology.com to help…
Thanks for bringing this to our attention. I’ll pray for the family and Ivy.
Dorothy from grammology
http://www.grammology.com
Dorothy Stahlneckers last blog post..A Moment to Reflect and Give Thanks
Hey Veronica–I “know” you through your comments on Witchy’s site. I think this is just GREAT of you to do. I’ve signed the petition and will hope for the best.
The Over-Thinkers last blog post..Welcome to the Freakshow! Have a seat, ya Nutbag.
[…] Her story is one that no child her age should have. Sickness. Blisters. Pain. […]
Petition signed and blogged about also!!
Thankyou so much, this is wonderful! If you could have seen Tiff’s reaction to this, you must know what hope & joy it has given her. Petition signed (a million times). Again thankyou & fingers crossed for a positive result.
Little Ivy is breaking my heart. I am going to go sign the petition right away. I also plan to blog this. I haven’t yet decided if I will straight copy your post or if I’ll write my own. Of course, I will link straight back here. Thank you for writing this.
Walking With Scissorss last blog post..My Pizza Guy Made My Day (Alternate Title: I Eat Too Much Pizza)
I’ve visited you site once before at Three Ring Circus. Not sure what trail I was following, but I remember you blog title because I used to call my life a three ring cricus when my three girls were all still home. I remember looking at the pictures of your beautiful children and thinking how lucky you were to have them. I didn’t take the time to read Ivy’s story then. I wish I had. Thanks to Lotus for writing about Ivy and linking me here. As I scrolled through the previous comments I saw many names of bloggers I recognize. You have a wonderful support base. Ivy is now in my heart and in my prayers that help will be forthcoming. I have signed your petition. God’s speed to you.
Patsys last blog post..Thursday Thirteen #10 A Little More Random
You are good to do this. I’ve signed the petition, and I added a little blurb linking to you and to the petition to my existing post. I do hope that we can all help. Ivy really is a beautiful little girl, and this is just heartbreaking and seems like such needless suffering. Thank you for taking action.
Maggie’s Minds last blog post..Haiku Friday 9/5/08 – Part Six
She’s such an angel.
I want to hold her and hug her.
And he
Jientjes last blog post..Opening Doors, Love at First Sight
And heal her.
I wish I could.
Jientjes last blog post..Opening Doors, Love at First Sight
Petition signed and my best wishes to Ivy and her family. I hope the people in charge see reason and help this little girl.
Lilacspecss last blog post..Dead Beat
Im sorry Ivy and your family is going through this. I really hope things improve hun.
Good luck with it all and Ivy your a very strong little one. Your in my prayers!!
good luck
Thanks for setting this up Veronica. I’m just composing a post about it now to help spread the word.
Lightenings last blog post..Artyculture Fashion Parade
……. in my thoughts.
paddys last blog post..SEX CRIME
You’re good stuff, Veronica. Good stuff.
(I just signed.)
maggie, dammits last blog post..What just happened here?
I heard of Ivy’s situation through Lceel and have signed the petition. You rock for spreading the word.
Hope this helps… moving story. I signed the petitiion!
Laura@StorytellinMamas last blog post..More Pets?
Hi! I have just reposted this blog on my myspace page, as well as, as a bulletin. Hopefully it will be reaching many many people soon. Good luck with Ivy. I hope something helps her get better.
I am so sorry you are going through this. I cannot seem to find the petition and if you direct me to where it is I will totally put it on my page.
Suzies last blog post..It’s Bloggin Time
Have signed. Hope it helps. Will spread the word. My heart goes out to Ivy and her family.
tashs last blog post..Pass Me The Wasabi
Hope you don’t mind. A bit rushed today so have used quite a bit of your post on mine to point people in the right direction. Was going to write and ask first and wait for a response but if I don’t get it done now I won’t get around to it. Sorry.
tashs last blog post..Pass Me The Wasabi
I wrote a bit of my own post and then copied your post to finish it off. Words were beginning to escape me the angrier I got that this beautiful child is being denied such a life altering treatment.
I also signed the petition and emailed out the story.
Thank you so much for sharing…..I sincerely hope she gets the treatment she needs.
MadWomanMegs last blog post..For the sake of a beautiful child
Reposted, twittered & plurked.
I’ve seen people repost from that, stumble it, and post it on a parenting forum.
Xbox4NappyRashs last blog post..Where can you buy a vagina wig?
…comment luv isn’t picking up the latest post anywhere though… bugger.
Xbox4NappyRashs last blog post..Where can you buy a vagina wig?
I have signed the petition. My best thought are with Ivy and her mum.
My prayers go out to you for your daughters recovery!
under the child care act a child has the right to enjoy better health, lead a normal life and interact with other children via playgroup or school.
by denying your child this medication they are simply commiting an act of child abuse and neglect. no parent could get away with treating a child this way so why do they get away with it. doesnt seem fair for either the parents or the child and they are the ones that feel the pain, either emotionally or physically.
My heart is with you and Ivy in this trying time.
xoxoxoxox
[…] saw this post of Veronica’s on her website, Sleepless Nights and was so moved by Ivy’s story that I have reposted it here on my site (with permission.) […]
Veronica, it’s almost up to 500 signatures! How amazing is that?!?!?!
Came here from Sarcastic Mom…petition is signed and comment made…I am going to add a link in my blog to this post…best wishes to Ivy and her dear family!
Hotmamamias last blog post..Haiku Friday
[…] http://somedaywewillsleep.com/?p=922#comment-8644 […]
i have a rare genetic disorder and have to have IVIG treatments during pregnancy. I completely understand how life saving it can be! i sure will sign!
shannon
Rock Star Maternity
The Domestic Engineer’s Union
Shannon, you were #500!
Xbox4NappyRashs last blog post..Where can you buy a vagina wig?
Poor little Ivy 🙁 She should be at home with her family not in hospital all the time.
[…] Please go read more about it, and sign the petition. […]
[…] to change their minds. To read about Ivy’s plight and sign the petition please head over to this website. Published […]
I have written a blog post with a link to this post about little Ivy over at http://rainbowofchaos.wordpress.com/2008/09/06/help-a-little-girl-receive-the-life-saving-medication-she-needs/
I have also posted about Ivy’s plight at But You Don’t Look Sick, a message board for people with chronic illnesses.
I hope it helps, because if anyone needs IVIG treatment it is Ivy.
Riayns last blog post..Help a little girl receive the life saving medication she needs
http://blackstonemyst.blogspot.com/2008/09/please-help.html
G
xx
mysts last blog post..Please help….
YOU PEOPLE NEED TO GET YOUR HEAD OUT OF YOUR BUTTS AND GIVE THIS LITTLE GIRL THE HELP SHE NEEDS. SHE DESERVES TO HAVE A NORMAL LIFE. SHE’S ONLY A BABY FOR GOODNESS SAKES!
Unbelievable. Just added my name to the petition. Will you please keep us updated?
Jills last blog post..Birthdays and Bindis
[…] You can find the post about Ivy here. […]
Ivy & family, I could just cry for you. What a horrendous and heartless decision to be made condemning a 2 year old child to a life of hospital visits and more pain.
Will be adding this petition to my blog & facebook page…
As always, our love & thoughts are with you all!
Becka, Johnathon & Madeline XXX
I cried through the entire Ivy post. Then I cried through the entire posting on my site. I hope I can make others shed a few tears, as bad as that sounds, it’s for a good cause.
You’re a wonderful friend.
[…] Ivy is a two year old little girl with a rare immunodefficiency condition. Long story short, the condition causes truly awful cycles of blistering, sloughing and reblistering on Ivy’s skin. You can read more about the specifics here. […]
signed the petition. Good luck
I will pray for dear Ivy…God will help you…keep your hope alive
I signed it & will keep her in my prayers…
We are Ivy’s Grandma and Pop.
She is a beautiful little girl.
Thank you for supporting her and her special Mum and Dad.
[…] the petition. Ivy is only two, and has already been in hospital more times than they can count. Ivy Girl | Sleepless Nights __________________ Excellence Coaching Solutions My […]
I’ve posted it on the forums at http://www.nappycino.com.au/forum
Last count was up to 741!
Hello little one
So young with a huge purpose. With a hideous affliction you little Ivy are helping us to open our hearts and to raise awareness showing how for centuries a few have control over the many, NO MORE, we have the right to choose the healing or medication of our choice. Colour Ivy’s world with beautiful highly vibrational music…Prayers of support on the way….well done mum…will net work this email to the masses.
Something needs to be done for this little one!!!
My thoughts and prayers go out to the family and friends.
My thoughs also with you – no child should be made to suffer
I found out about Ivy through Hotmamamia at The Pittsburgh Deli. Thank you for what you’re doing. My post on Ivy is up today.
jen of a2eatwrites last blog post..Please Help Ivy
I’ll be praying for you, God bless.
Jena Isles last blog post..Great Cash Contest at Successbiz4all
Oh my goodness this is so sad i am more then happy to sign hope something gets sorted real soon i think its disgusting how they can decide this
1000 names right now!
Xbox4NappyRashs last blog post..If I may…
Proud to say I was 1015 and I have definatley blogged this. I truely hope this gets their attention and she gets the treatment.
God bless.
beautifulmesss last blog post..a must share
[…] you a moment to take a few deep breaths, and when you have calmed down, please click over to read Ivy’s story. Then sign this […]
[…] you a moment to take a few deep breaths, and when you have calmed down, please click over to read Ivy’s story. Then sign this […]
Signed the petition. Good step taken..
I was number 1231. I had just read the update giving the fantastic news of Ivy’s approval. As the tenor of the tears running down my cheeks changed, I signed my name. How could I not want to sign my name to a document so filled with hope?
My thoughts are with the family.
Get this girl some treatment.
I signed the petition even though Ivy has already been approved for her IVIG. I signed it because I want those jokers who denied her the procedure in the first place to see just how many people there are on Ivy’s side now and going forward. I linked to this in my blog. God bless Ivy, sweet beautiful girl.
You are a wonderful, awesome, loving and caring woman, and I hope you sleep well knowing you helped someone so much. Seriously. I signed and hoped, but I didn’t expect such great news or so soon. Thank you for giving us a way to help.
Maggie’s Minds last blog post..Congrats and Hotness, Too!
God bless her! She is beautiful! I am glad to hear the medication has been approved. I am sorry that you had to suffer this ordeal in the first place, but it had a happy ending, which is what really matters!
Glad to read that her treatment was approved. Thank you for letting us know about this.
Alex Elliots last blog post..5 New Tires
Just followed a link to Ivy’s story from FLOTSAM’S blog. I am so happy to learn that the medication has been approved. And I’m so sorry that she (and you) had to endure this in the first place.
Love and (((hugs))) from Georgia, USA
SO glad to hear that Ivy’s treatment has been approved! Sending many hopes for success.
Ruths last blog post..R is for rest, roosting and rainbows
So happy to hear that the treatment was approved. I, myself, have had two IVIg treatments during our last round of IVF—and low and behold, it was the one that worked! I pray that the treatment does what it needs to for your beautiful little girl.
Power to the people who share their stories and care!
Panns last blog post..Reformed Maverick
[…] was actually going to post an entry about a sick little girl named Ivy, and ask you to sign a petition that would hopefully help her get the treatment she needed. […]
I am so happy for your little girl! I went and signed my name on the petition anyway…just in case. We have an 11 month old son who is waiting for a liver transplant and we feel your pain. No playgroups…no playground…no grocery store. We are in the hospital with him right now actually. He will be immunosuppressed for the rest of his life. His website is http://www.GiftforGavin.org.
We wish you the very best and hope your little girl will have a full, vibrant, beautiful FUN life (that doesn’t include hospitals!!!!)!