MDDA is incredibly fortunate to have members like Yolanda, whose passion and commitment to our mission are truly inspiring. Over the past few years, Yolanda has gone above and beyond—whether through fundraising, advocacy, or sharing her personal story—to make a real difference for those living with PKU and other IEM. Her contributions, from participating in interviews and events to writing heartfelt blogs, have been powerful platforms to educate, inspire, and highlight the impact of MDDA’s work. Each of Yolanda’s efforts has touched lives and strengthened our community, and we are deeply grateful—not only to her but to all our members—for their unwavering dedication and support.
Yolanda’s Member Story
When Hudson was diagnosed with Phenylketonuria (PKU) at 5 days old in 2021, one of the biggest things I struggled with personally as his mum was a sense of loneliness. It was hard being surrounded by friends and family who wanted to support us, but who didn’t know what PKU was or what the management looked like day to day. In those early days, our first few introductions to Metabolic Dietary Disorder Association (MDDA) were so important in helping us find our feet and feel reassured that things were going to be ok
We received a little parent/baby care package, which instantly made us feel cared for. I was able to reach out to a couple of MDDA members over the phone, who generously shared their own journeys with me, and through the MDDA we were connected to other new parents in a similar stage of their parenting journey to us. From those early connections, strong friendships have grown, and so has our confidence as a family.
In the time sense, I’ve been lucky enough to get a glimpse into all the amazing work the MDDA do behind the scenes: their constant advocacy work, all the effort that goes into organising conferences and events, the time spent perfecting the development of their LowPro app. I feel an immense sense of gratitude, awe and pride for the volunteers who work tirelessly every year, with limited resources, to support families living with rare inborn errors of metabolism throughout Australia. But most of all, it is the connections and friendships that we have formed through the MDDA that has had the biggest impact on our family and for which I am forever grateful.
The time we have spent with other IEM families over the last year has filled our cup and left us feeling better supported than we were before. Thank you to everyone we have interacted with over the past years. We can’t wait to see what 2025 and beyond has in store for our amazing community!