When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi.
As reported in The Northern Star, Shanna’s 13-year-old son Jayden, is the second oldest person in Australia living with a rare Inborn Error of Metabolism (IEM) condition known as tyrosinemia type 1 (TYR1).
That in itself is remarkable, considering Jayden almost died from liver failure when he was only nine months old. Parents of babies with TYR1 may find their babies failing to grow and thrive despite all their best parenting efforts.
Heartbreakingly, these babies experience such symptoms as diarrhea, bloody stools, jaundice, trouble breathing, and increased bleeding or bruising. If left untreated, TYR 1 can lead brain impairment, respiratory failure, and an early death.
About 1 in 100,000 individuals worldwide are affected by this rare autosomal recessive genetic metabolic disorder. The disorder is more common in Norway, where 1 in 60,000 to 74,000 individuals are affected, and in Quebec, Canada where it occurs in about 1 in 16,000 individuals.
Jayden, like other children and adults with tyrosinemia type I, has to eat a special low-protein diet because they are not able to process food the way most people do. And there lies the problem: their special diets are expensive. A single loaf of low-protein bread costs about $10 dollars!
Jayden has been able to grow up into a healthy, active, 13-year-old because his family received financial support from a government grant. But only 902 people in Australia have an inborn error of metabolism—and surely there were plenty of low-protein options in supermarkets these days! The grant came up on the chopping block.
Governments all over the world are facing similar dilemmas. In an atmosphere of budget cuts, often it’s the grants and programs that serve the smallest populations that get cut. After all, it makes good budgetary sense to get more bang for every buck allocated.
In Jayden’s case, his mother, Shanna, took action, and raised awareness of the problem of paying for “medical food.” Ultimately, her efforts paid off and the grant was extended.
You can read more about Jayden and Shanna Druisi’s campaign to extend Australia’s IEM grant by clicking on the links below:
