Our Stories

Pompe Disease

These are the stories of our Australian Pompe Patients.

  • Baby Tully Late-onset Pompe Disease

    Tully’s Story

    Our little boy was born at Christmas time during the COVID-19 pandemic in 2020. He was born early du...

  • Tarryn’s Story

    Hi, my name is Tarryn Holland and I have Pompe disease. Looking back I believe that I displayed symp...

  • Raymond’s Story

    I was diagnosed in 2002 at the age of 52. Pompe is not a new visitor to our family, as my brother pa...

  • Catherine’s Story

    I am Catherine, a happily married mother of two, my daughter Jaime now a young adult and my son, Wil...

  • Don’s Story

    Hello, my name is Don. I am 50 years old and work as a Science teacher. I was diagnosed with Pompe d...

  • Nicola’s Story

    Hi my name is Nicola.  I have 2 little boys with Pompe disease who were born in 2012 and 2014. I n...

  • Leanne’s Story

    “Enough is enough” Those words were the catalyst, those words represented the change in ...

Campbell

Nate

Thomas and Baylin