Please help Ivy lead a normal life! Important Message.

[k8ty]

This message has been approved by our fantastic moderators, who I thank so much for letting me put this here.

Many of you would know Tiff aka Tiggy from the forums. This thread is about helping her daughter Ivy who is 2 years old.

Ivy has a rare immune deficiency IgG and because of that Ivy has Pemphigus which is an autoimmune response to the IgG

Please click here to see pictures of Ivy's Pemphigus but do know that they are graphic.

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.


The Help Ivy Lead A Normal Life Petition to Australian National Blood Authority was created by and written by Veronica Foale (veronica@somedaywewillsleep.com)

Veronica is a lovely lady who started the petition, I am only posting here because Im trying to help wherever I possibly can.

Please, could you sign the petition. Send this on to your family and friends and if you chat to other members, who dont usually come into this part of the forum, send them in here. Tiff is one of us, and needs our people power help NOW.

Please sign the petition here

http://www.petitiononline.com/ivygirl/petition.html

and lets send Tiff and Ivy and the rest of the family all the well wishes and good thoughts we possibly can.

Thankyou so much, again to the moderators and especially Astrolady for allowing me to put this here. What bigger platform could I have? Thankyou

[Phteven]

I've signed it and forwarded it on.

[Kitt3n]

Petition signed.

If only we could do more..... poor little girl

[The[cookie]Doctor]

Poor little munchkin
& William's story is heartbreaking too
Thinking of thier families.

[BellyBelly]

Are they going to the media? Surely would pull at heartstrings and anger....

[MistyFying]

I've signed it. I hope it lends some weight to Tiff's case.

[Lisa]

Oh wow... poor little Ivy
I am posting this to all of my friends on facebook... hopefully I can get them all to sign it too.

[k8ty]

Thanks everyone for signing and sending it on. Its been great watching the numbers jump this afternoon.

I believe one of our other BB members has sent an email to TT, but as far as anything else goes Im not sure. I think its a fabulous idea and if the media could get involved it would surely be a positive step.

I know that Tiff and her family have written to their local MP and it was handed on to the Minister of Health on Friday just passed so we all have fingers and toes crossed that makes a difference.

Any news I will certainly be back here to let everyone know.

If anyone else has any ideas of how to help, Id love to hear them. I would love to be able to really help the family, I just dont know where to start.

Thanks again everyone xoxoxo

[BellyBelly]

I'd be sending in the story and pictures to all the morning & current affiars shows they will do work for you too, investigating...

[BellyBelly]

ps. I am in frequent contact with the shadow health minister here, maybe you could email the letter to me and I will froward it on?

[*charmalea*]

that poor little girl makes me sad ..

[~Raven~]

Signed.

For sweet little Ivy. Such a beautiful little cherub!

[Trish]

Signed, forwarded and added to my FB page too.

Poor little Ivy. And poor Tiff too. You have already been through so much huni I am sorry to hear ou have been thrown yet another hurdle

[squidipa]

Unbelievable how can the Government just let this go Poor child ill be praying for her and the family.

[Frantelle]

Signed

[krysalyss]

Can I ask - what was the reason they gave for refusing the request?

[Hoody]

Signed here too. The pics made me cry poor Ivy. I hope the petition works.

[diva det]

i remmeber tiff and her tribe from here
poor ivy- thank goodness she has such a beautiful family around her
signed and sent on!!!
good luck
hang in there

odette