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The trouble with growth hormone.

We met with the endocrinologist,

who was almost as upset as I was about Ivy’s suspension of the growth hormone.

Unfortunately the ivory tower people don’t take anything but the amount of growth into consideration -

not the improvement of side effects

or the acceleration of bone density

or the impact all of that has on a little girl who just wants to be normal

and when all is said and done, Ivy’s growth has been inadequate for them.

Despite what we consider to be extraordinary

and despite research that backs all of these ¬†advances we have seen in Ivy with cold hard evidence that suggests that growth hormone is most definitely in the small girl’s best interests.

The endocrinologist will fight -

she will appeal and write letters and go before the board

but the truth is, it looks as though it is going to be a long, hard fight to convince anyone that Ivy should continue.

We wrote a letter to our local member with the encouragement from Ivy’s medical team,

who responded by telling us he would forward it onto the health minister

but not to expect much at all, considering we had a caretaker government.

Personally, I would have thought, with an impending election looming, now would be a great time to do right by the people.

Apparently not.

They’re more likely to do nothing because Australia feels indifferent about its leaders

and evidently they feel the same way about us.

Who’d have thought the simple logistics of keeping your child in the best of health would all come down to politics.

When you become a parent you most certainly never take that into consideration.

Well, I didn’t, at least.

Perhaps I am naive

or perhaps our issue is not worth their time.

Who knows.

I felt pretty helpless when we were told all of that but not one to take no for an answer, the endocrinologist suggested we buy the human growth hormone privately.

Yes!

Of course we will!

Anything at all to help the girl

but at a hefty price.

The pharmaceutical company has given us the best price they can but Ivy’s weekly dose equates to around $165, which is doable if we eat five minute noodles for the foreseeable future.

Seriously though, we will eat and I will get that growth hormone for the girl come hell or high waters.

Let’s just hope the ivory tower people reconsider soon.

 

We ordered it and paid for the first fortnight’s worth last week

and after much backing and forthing and co-ordination challenges

it’s here -

to start tonight.

Is the girl happy about it?

You bet your subcutaneous needle she is.

 

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23 Responses to “The trouble with growth hormone.”

  • Fiona:

    Can I suggest approaching the Steve waugh foundation for possible support?

  • Kathryn:

    Tiffany,
    PLEASE let us know where we can help out towards this cost.
    I am sure that there are plenty of us, your readers, who could help.
    Even if it was just $5 here and $10 there, we would love to help.
    I would happily give up a few takeaway coffees a week for Ivy. Without a moment’s hesitation.
    Love,
    K x

  • goaldeebug:

    Is that stuff available and cheaper in the US or Canada?

    Maybe I can get it and send it to you?

  • kelly:

    My heart aches for you both, will you accept donations to help with funding for the hormones? I would be more than willing to donate & get the word out hoping that others donate .. I can only hope that the rest of the community will support you (since the government wont)
    Love & thoughts & prayers for that beautiful small girl of yours.

  • Amber:

    I remember signing a petition to get Ivy’s IVIG approved (seems like it was quiet a while ago now.) I don’t know if that is feasible, or something that would work for the growth hormone, but I know that I, and I’m sure many others, would be more than willing to sign another petition to benefit the small (but growing!) girl. I love that smile of hers.

  • SassyCupcakes:

    I have to be careful what I say here, but I very much understand the impact of politics on individual children this week. And frankly it’s abhorrent. Let’s leave it at that.

    Could your local paper or even a magazine or tv show get you some public discussion about this? I think it’s much harder for Ivory tower people to make these awful decisions when others are watching.

    Maybe it’s time for another Team Ivy day too? This time to help cover the cost of it so it’s not so hard on you guys.

  • Dianne Nunn (56 comments.):

    Is it possible for me to purchase this? Say one week’s worth and have it sent to Ivy? Or can I send money to you to help – just one week at the moment?

  • Hayley:

    Could you start a crowd funding campaign. I maybe if a few of us could contribute even a small amount it it might help while you wage war with the bureaucrats?

  • Alison:

    I’m glad that Ivy is able to still have access to GH even if its not government subsidised, Ivy looks so happy. Happy to that the Endo will also fight. The issue of GH replacement has been going on for years.

    Hugs from across the lake.

  • EssentiallyJess (5 comments.):

    It’s so bloody ridiculous! Makes you really wonder about the people who make these decision and what kind of compassion they have.
    Hope you get more than noodles for dinner Tiff xx

  • Paula:

    I would also like to buy a week’s worth for Ivy. How can I do it? How can I send you the money? Can you set up a paypal account for people like me who would like to help?

  • Mum:

    Irrespective of the fact that you, as a family unit pay your taxes, when it comes to government funding (for items included on the PBS), politics unfortunately will always play a part. What is so ridiculous about all of this, is that a “general” criteria is set in place without regard to individuals’ statistics and that the parameters could change with a change of government and ministerial decisions. For that very reason, before the up coming election, the current minister should consider Ivy’s case and make a decision now, subject to review if necessary, by a possible different minister, post election. To use the election as an excuse for inaction is disgraceful, to say the very least.

    Now with the promise of warmer weather and the first fortnight’s supply, Ivy might be able to meet the required standard through the usual seasonal growth spurt, while the appeal is ongoing. Meantime, I know that somehow you will find the way to fund the ongoing cost until a decision is reached on the appeal, hopefully soon.

    Ivy DESERVES to GROW and the powers that be need to SEE! xoxo

  • BW aka Barbara from Boston:

    Just a thought – one that i have not researched – but there is a web site called kickstarter that musician have used to raise money to make albums, and there may be other sites for raising money.

  • BW aka Barbara from Boston:

    Me again. Forget kickstarter – its for the creative arts. Sorry. If you google fundraising sites there are Give Forward, My Event and others.

  • Jeanette (19 comments.):

    Love that smile :)

  • river (194 comments.):

    I see Amber has suggested a petition, same as the one we all signed for Ivy’s IVIG. I second the motion and will sign in a heartbeat.
    $165 a week is a LOT when you are already stretched to the limit with everything else you already have going on.

  • Emma (1 comments.):

    Healthcare funding sucks the big one, so much robbing Peter to pay Paul and the patient never wins. I’m glad you’re able to continue Ivy’s treatment, but bitterly disappointed in our government that it should be out of your own pocket.

  • Naomi:

    Tiff, we too would like to contribute to purchase a weeks worth of growth meds for Ivy. Check out http://peoplepledge.com.au/ it’s an aussie company (relatively new) donation aren’t tax deductible but it is an easy and fast way to set up an online campaign.

  • Carol:

    Happy to donate – please let us know how xx

  • Trish (42 comments.):

    It is a travesty that they consider the whole range of benefits not just growth in isolation.
    Ivy looks delighted xox none the less about sub cut needles and new shoes too hopefully.

  • Trish (42 comments.):

    oops that they DON”T consider

  • Kate:

    Please let us know how to donate, it’s very important!

  • Mary:

    Please let me know how I can donate towards Ivy’s growth hormone treatment. <3

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