Five years ago, Hannah’s House was introduced to a resilient young girl facing significant health challenges. Sophie had her first seizure just weeks after birth and was eventually diagnosed with Dravet Syndrome, a rare and catastrophic form of Epilepsy, when she was four years old.

When we met a then 8 year old Sophie, she’d recently been transferred to paediatric palliative care and had a not-for-resuscitation order put into place.

“It was the worst thing ever to have to discuss,” Sophie’s mum Shellie says. “From the clinical side of things it made sense, but on the emotional side, it’s my baby’s life we’re talking about.”

Five years later Sophie is attending (and absolutely loving) high school, accompanied by her Hannah’s House nurses. She even went along to her Year 6 Camp in 2020.

Shellie puts it simply – “Sophie is thriving.”

So what changed? How did Sophie go from a “massive decline” in her health, to a “feisty” 13 year old school student?

We caught up with Sophie and Shellie to hear all about it. Watch Sophie’s Story below.