Family stories

Awareness and understanding are key to enabling progress for childhood dementia. Here, families share their stories and shed light on what it’s really like living with childhood dementia.

Eddie's story

Ali describes her son, Eddie, as happy, cheeky and incredibly charismatic. “People were drawn to him," she says. “He was very generous and loved to joke."

When he was born, Ali was blissfully unaware Eddie had a fatal condition. “While in hospital for tests, I remember walking around and seeing kids with all sorts of medical conditions. I was thinking: ‘At least my little baby doesn't have that.' 

Read Eddie's story

Angelina's story

“Just two years ago, Angelina’s schoolwork showed full pages of neat writing, underlining, answering of questions and problem-solving. Now Angelina is lucky to write a few words or read simple sentences.”

Read Angelina's story

Four mums describe childhood dementia