Ivy Tregenza’s life comes down to numbers.
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It takes hundreds of blood donors a year to keep her alive, $165 a week to help her grow and one government that just won’t listen.
Born with a rare immune deficiency disease, Ivy requires regular blood transfusions to stay alive and growth hormone therapy to keep her well.
Ivy, 7, of Ellalong, has been scrapped from the Pharmaceutical Benefits Scheme leaving the family of nine to find $165 a week to pay for the growth hormone Neutropin to help their little girl grow.
“The federal government has strict guidelines for this sort of treatment and apparently Ivy’s growth isn’t adequate enough (even though she has grown six centimetres in the past year), so her treatment has been ceased,” Ivy’s mother, Tiffany Tregenza, said.
“And it was quite a dramatic cessation because we didn’t even know about it until the hormone didn’t show up.”
Ivy requires the hormone therapy for growth but also to increase her fragile bone density.
“Ivy’s bone density was quite poor before we started the treatment, but now it is considered normal again,” Mrs Tregenza said.
“But if Ivy can’t have this treatment then everything will deteriorate.”
The Tregenzas, along with Ivy’s medical team, have taken their fight to the government.
“We have written a letter to our local member [Joel Fitzgibbon] who responded by telling us he would forward it to the health minister, but we’re not expecting much,” Mrs Tregenza said.
“The truth is this will be a long hard fight and I don’t think the federal government has any interest in helping someone like Ivy, and that’s very distressing.
“I would have thought that, with an impending election, now would be a great time to do the right thing by people. Apparently not.
“Who would have thought the simple logistics of keeping your child in the best of health would come down to politics.”
Despite this, the family will do whatever it takes to pay for Ivy’s treatment.
“We will do this, but we’ll be stretched to the absolute limit to do so,” Mrs Tregenza said.
“The most important thing of all is that [the treatment] gave Ivy back some confidence, it helped her to see that medications can and do work; it gave her a sense of normality and a reason to celebrate her goals.
“I wonder what kind of growth would be enough?”