When you hear the words “Niemann-Pick disease”...

When you hear the words “Niemann-Pick disease”, you might think first of the medical facts – a rare genetic condition, no cure, limited treatments. But behind every diagnosis is a family living, loving, and creating moments that matter.

For Renee, mum to three children diagnosed with Niemann-Pick type C (NPC) – Hudson (10), Holly (9), and Austin (7) – life is not defined by the disease, but by the joy, resilience, and hope that her family carries forward each day.

In her own words:

“We want to have a bright future to look forward to. My children deserve to have a life full of laughter and love. I hope they can dream big, hit all their milestones and live long and happy lives together.

My kids are so much more than their diagnosis.

Our lives might look different but we are out here making every day count!”

Renee’s voice is a reminder of what lies at the heart of our community: love, courage, and the determination to make every moment matter. Families like hers show us that living with Niemann-Pick is about so much more than the challenges — it is about cherishing laughter, celebrating milestones, and holding on to hope for a brighter future.

At the Australian NPC Disease Foundation (ANPDF), we are committed to amplifying these voices. They are the stories that fuel advocacy, drive research, and remind the world why finding answers for Niemann-Pick is so important.

To Renee, Hudson, Holly, and Austin – thank you for sharing your journey. Your courage inspires us all.

While we approach Rare Disease Day, we would love to hear from more families in our community. Sharing your story is one of the most powerful ways to raise awareness and ensure that every voice is heard.

📩 If you would like to share your journey with us, please get in touch — together, we can amplify your voice.

🧡 Together, we will continue to fight for more awareness, better treatments, and, one day, a cure.