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A legacy of love that will last forever

On a winter morning in 2018, 6 years after her diagnosis. Mia died at home. She was 9 years old.

Mia had childhood dementia.

Mia was so much more than her diagnosis. Mia was a first child, a first granddaughter, the child that captured everyone's affections with her ‘Uh Oh’ and sweet smiles.  She was a child who played with tonka trucks, and whose eyes would light up when her Dad walked in the door. She squealed and made kissy noises, and her smile lit up her mother’s heart. She was a big sister, and had a beautiful relationship with her brother Toby, two peas in a pod.

“Mia used to hug me a lot when I was a baby... Sometimes it was a bit too tight.”  Toby, Mia’s brother

Mia’s family had to watch her fade away slowly over a period of 6 years. She became more and more vulnerable and dependent on them for all her needs, requiring 24 hour care. They had years of explaining what their daughter’s condition was to blank faces with little to no understanding. They had hundreds of visits to specialists and therapists, navigating complex health and disability systems on their own. Advocating for her needs and for more support. Trying to understand and communicate whether she was in discomfort or pain. All while trying to keep the rest of life going in face of such profound grief knowing that their little girl was going to die. 

Donate now for change

When we asked Peta, Mia’s mum, to speak recently at the Childhood Dementia Initiative Symposium, in front of esteemed researchers, clinicians and policy experts, she did so with such open vulnerability. She shared the story above about her beautiful girl, and how childhood dementia slowly took her away. And of the impact it had not just on her, but on her whole family. 

And she was not alone. 

Over and over again families share their most painful and personal experiences of childhood dementia. They share their children’s photographs and videos. Of joy and of pain. They share their anger, their frustration, their anguish, and they share their hopes in the face of immense loss. They share their most precious memories. 

They give us this gift, so that real meaningful change can happen so that no other child, no other family has to face the same. 

Often they tell Childhood Dementia Initiative that this was the first time they were ever asked to do so. 

Childhood Dementia Initiative works with families to build a better future for all children with dementia. We connect families to research, to health care and dementia services, to policy makers,  to funders, to the media, and to each other. We raise awareness of the immense responsibility that families are made to bear. 

And we honour the memories of each child who has lived and died with dementia. 

Donate now to honour them

Their legacies are changing the way research is collaborated on and funded. Their legacies are changing the way children are seen and cared for across healthcare services. Their legacies are changing the way governments are supporting families. Their legacies are connecting families of children with dementia to each other, lifting them out of isolation. Their legacies are changing the way communities understand and support children with dementia. 

While Childhood Dementia Initiative is all about change for future generations, it was formed as a legacy of children with dementia. Of children like Mia. It is a legacy of the far too short and painful lives they have lived, and the hope and change they have inspired. It is a legacy of children that are so deeply loved, a love that will last forever.  

Thank you for driving change that will last for generations to come.