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”
YAAAAAAAAAAAAAAAAY!!!
Sarcastic Moms last blog post..Welcome home, stranger!
You are a star for organizing the petition and what a wonderful result. I have followed Ivy’s story and it is just fantastic that she will be getting some relief from her pain and suffering. Well done.
Sueblimelys last blog post..Bloggers can have a powerful voice
[…] Thanks so much to this gal! Who started it all. […]
Congratulations on the IVIG approval! My daughter has been on IVIG/SCIG for over seven years now, as treatment for her Primary Immune Deficiency Disease (hypogamaglobunemia and CVID). IVIG is literally a lifesaving treatment for her (without it, she would have a life expectancy of less than a year), but I know how difficult it can be to get it approved and paid for. Best of luck to you and Ivy – I pray that IVIG will give her the miracle and hope for quality of life it gave us.
This is the best news EVER!!!! You made my day, heck you made my moth!
[…] read what this lovely person […]
[…] Ivy Girl – I didn’t get to post about this as it was happening last weekend due to some family stuff […]
How wonderful to hear that you have made a difference and that Ivy will be getting the treatment she needs! Thanks for inspiring us all. 🙂
Amazing indeed. I’m so happy for you all.
Cheers
Maddys last blog post..Photo Friday – ordinary
[…] the powers that be said no. That is, they said no until Veronica from Sleepless Nights had something to say about it. Veronica is one of those rare, wonderful souls that instead of […]
How awesome that Ivy was approved!!! Thank God!!! I put the petition link on a Taylor Hicks fan forum that I post on. Hope it helped! May God bless Ivy.
Fantastic!!!! How powerful the blogging community is … I’m soooo happy to hear that Ivy has been approved. What a blessing.
[…] public links >> treatment Ivy Girl Saved by xBodhi on Tue 28-10-2008 A Day in the Life: Another Violent Episode for OJ Saved by […]
[…] Visit this Link and SIGN THE PETITION It takes about 30 seconds and you could change Ivy’s life. It costs […]
A very bittersweet and touching post. I will pray for her tonight.
[…] Visit this Link and SIGN THE PETITION It takes about 30 seconds and you could change Ivy’s life. It costs […]
[…] have quality of life. I had been reading her mum’s blog for nearly 12 months at that point, so I started a petition. Only a few days in, people had reposted my post all over the internet and we’d caught the […]
[…] time readers will remember Ivy from 18 months ago, when we petitioned for her IVIG to be approved and […]