If I gave you 10 bucks right now, what would you do with it? Buy a ticket to a movie matinee, maybe, or pick up that new paperback you’ve been dying to read.
You probably wouldn’t run out to the store and buy a single loaf of bread.
But when you’ve got a child like Jayden, who was diagnosed with an Inborn Error of Metabolism (IEM) at nine months old, that bread is worth its weight in gold… almost literally.
Jayden’s specific kind of IEM, Tyrosinemia Type 1 or HT1, requires a very strict low-protein diet. And when we say strict, we mean it: No meat. No dairy. No pasta—and that’s just to start.
I’m sure many of you out there know what it’s like to eat your way through the restricted list, and I’m sure it’s no surprise that the strict diet comes with an even stricter price tag.
10 bucks for bread? Try 50 bucks to ship a smidge of cheese.
The financial struggle is real and its horrifying to families dealing with food costs on top of doctors’ appointments and prescriptions.
That’s why Jayden’s mother, Shanna Driussi, couldn’t afford to stay silent when the Australian government threatened the IEM Food Grant, a monthly program that helps families pay for the diet.
The Norther Star, based out of Australia details the family’s story.
In response to the pending cancellation, Driussi took to the newspapers, campaigning and sharing her story with the hopes someone would listen.
And someone did.
Inspired by her experiences, MP Kevin Hogan of the Australian parliament reviewed the grant with Health Minister Sussan Ley.
As of August 2015, the IEM Food Grant was pulled from the oven just before it burned up.
This is a huge accomplishment. Government feels like an apathetic, overbearing entity when it comes to the realities of rare disease. But this proves how much one person can achieve just by speaking up.
And on a personal level, the IEM Food Grant’s safety is more than a relief for Driussi. Her son is one of 902 children in Australia with IEM, and at only 13 years old, he is actually the second oldest child in the country living with the diagnosis.
Naturally, she wants to help her son, and the other children, continue breaking records and expectations for life with IEM.
The grant is another ingredient to make that possible.
Haven’t had your fill? Use your voice and spread the word about the Driussi’s through your social media.
