Children with dementia need your help. Today, you can make the difference.

Today I am grateful to say that my son, Toby, has childhood dementia. Here's why:

When we first learned Toby had Cockayne syndrome, we were completely alone. No treatments, no clinical trials, no appropriate support and no community experiencing what we were - the silence was deafening.

But today, I stand with families across Australia all impacted by childhood dementia.

I'll never forget speaking at Parliament House with Childhood Dementia Initiative. Across the room, I saw two women whose faces showed the soul-destroying devastation of having recently lost their children to dementia. Yet there they were, standing strong together to prevent other children's suffering.

One day, that will be me. Cures are coming, but not soon enough for Toby.

As a Childhood Dementia Initiative Family Advocate I've spoken to the media, been on TV, and helped build an online community where parents can support each other for the first time.

Not all parents can do what I'm doing. And I can't do it forever. We need your support.

Please don't leave our children to slowly die without taking action. Today, you can make the difference. Donate now.

With gratitude and hope,