June is an important month in my household. My son, Hudson, was born last year on the 12th of June. His first birthday is this weekend, and we are so excited to celebrate his special day! There is another important day in our calendar this month – the 28th of June, which is International Neonatal Screening Day and International PKU Awareness Day.
Hudson, was diagnosed with Phenylketonuria (PKU) when he was five days old. PKU is a debilitating, rare genetic metabolic disorder in which liver cells are unable to break down the amino acid Phe, resulting in toxic levels building in the blood. PKU affects approximately 1 in 11,000 babies a year in Australia. Without early detection and management, babies with PKU show signs of developmental delay and may develop severe brain damage. In Australia, the only currently available treatment option for PKU is adhering to a strict, lifelong, low-protein diet.
Neonatal screening was first introduced over 50 years ago for the purpose of screening babies for PKU. Without this screening, our son’s life would be very different. Early detection via the newborn screening test has allowed us to manage our son’s condition and prevent its harmful effects. Nenonatal Screening Day provides an opportunity to pay tribute to those who pioneered and expanded neonatal screening, allowing for early (potentially life-saving) intervention and management of genetic conditions such as PKU.
For the months of May and June, the Australian Metabolic Dietary Disorder Association (MDDA) is running The Great Protein Challenge, a way to raise awareness for neonatal screening and metabolic conditions such as PKU, while raising much needed funds. Those taking part in the Challenge commit to eating less than 10g of protein a day, a daily reality for many people living with PKU (most of whom have an allowance much less than this).
On Tuesday 31 May, I participated in The Great Protein Challenge, restricting myself to 6g of protein (Hudson’s daily allowance) in support of the amazing work done by the MDDA. Words can’t describe how grateful we are for all they have done for us personally this last year, and all they do in the daily fight for fairness for Australians living with rare metabolic conditions.
In true Retail Zoo style, the head office got behind my challenge wholeheartedly, blending up low protein drinks from the Boost menu (Berry Crush, Lychee Crush and Watermelon Crush) while raising over $1,200. I am so grateful and proud to say we were able to #makesomenoiseforpku!
For more information about the Great Protein Challenge visit here.
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