What is it like for families who live with the disease?

The story of each family affected is so very personal, laced with fears and dark days, but also with love, caring, bravery and hope.

Archie’s Story

The first thing that hit Archie’s parents was the magnitude of the illness; no known cure, the uncertain future, their child faced with a fight for life against a disease that appeared as if from nowhere and gave a prognosis of just five years.

Millie’s Story Part 1

The Law family’s story started on Christmas Day, when Millie turned blue at home. A hole in the heart was quickly diagnosed, suggesting a cardiac problem. Chris Law tells her story.

Millie’s Story Part 2

The Law family’s story started on Christmas Day, when Millie turned blue at home. A hole in the heart was quickly diagnosed, suggesting a cardiac problem. Chris Law tells her story.