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WE CAN'T WAIT

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We Can’t Wait: support children and families impacted by childhood dementia

Children with childhood dementia can’t wait for a diagnosis, for research, for treatments, for support behind every family.

Childhood dementia is caused by more than 145 conditions that progressively damage the brain. Half of children with childhood dementia die before they turn 10. For most children, there is no treatment available to them.

But the science is here. New medicines show that early diagnosis and treatment can change the outcome for a child. What we need now is for our systems – the people, the processes and the policies – to catch up.

Every child deserves that chance. Families shouldn’t be told to go home and make memories when the science to help their child already exists.

Your gift helps us push for earlier diagnosis, faster development of and access to new treatments, and support that stands beside every family when they need it most.

Children with childhood dementia can’t wait. Please give today.

Meet some of the many children who have shaped why this work, changing systems, health and care, is so urgent. Thank you to these beautiful children and their courageous, generous families for sharing with us.

Angelina lived with Lafora disease. She died aged 21.

Angelina was a healthy child until the age of 14, when she started having seizures. Testing showed she had a terminal condition called Lafora disease, which causes childhood dementia. Over the years she lost the ability to read, write and talk, and then to walk. Her body let her down. She felt like she was in a cage she couldn't get out of.

“I want people to see her progression and get angry, and want them to want to make change. Now."
Niki, Angelina's mum

We Can't Wait. Without change, this will keep happening — to more children, to more families.
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Toby is 11 years old and lives with Cockayne syndrome.

“I think the heartbreaking part of childhood dementia is the regressive nature of it. Having a child, watching them grow, watching them achieve and then watching that slowly be unpicked until there's nothing left. To me, that is what makes it different, watching someone stage by stage die, parts of them dying. It's a very slow and very cruel disease."
Nicole, Toby's mum

We Can't Wait. We need help now.
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Hannah is 13 years old. She lives with UBTF neuroregression syndrome (UNS).

“I see photos from just a year ago, when we moved to our new home and thought my daughter, Hannah, would be able to walk to school every day. She's now in a wheelchair. Every photo is a reminder of how much we are losing to childhood dementia."
“The line between the tears and the laughter is so paper thin. If I don't try and see the joy I will be consumed by the grief." 
Rachel, Hannah's mum

We Can't Wait. Childhood dementia steals everything.
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Noah lived with Niemann-Pick disease type C. He died aged 8.

Noah was from the idyllic island of Bali. He was fostered at 11 hours old and adopted by Geoff and Jane, his Australian family, who were living and working in Bali at the time. He was a happy and healthy baby who met all his milestones. He spent his days going to the beach, riding horses, and playing with friends and his beloved giant groodle, Nyame. His world was full of joy and laughter.

“As kids grew up, Noah sort of grew down. I wish he could have kept running and playing with his cousins. I wish he could have kept playing with his friends. I wish that I didn't have to understand that my son will never grow up or grow old." 
Jane, Noah's mum

We Can't Wait. Childhood dementia takes, and takes, and takes.

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Eddie lived with both cancer and Niemann-Pick disease type C, a condition that causes childhood dementia. He died aged 7.

“You Google it [Niemann-Pick disease type C], and it's terrible. But it was still hard to fathom because he looked like anyone else's gorgeous little baby. We didn't have any history of it in our family."

“He taught a lot of people to slow down, live the best life you can, be brave and be happy. His legacy lives on." 
Ali, Eddie's mum

We Can't Wait. Every family deserves care and support, whether it's cancer or dementia.
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Thomas lived with Sanfilippo syndrome. He died aged 23.

“When you hear 'dementia', you picture old age. You picture grandparents. You don't picture a child. You don't picture someone losing words they have just learned. Forgetting how to walk to a room they've lived in their whole life. Losing the ability to chew. To swallow. To recognise the brother who used to chase them around the backyard. But that is what childhood dementia is. A progressive, relentless, and at the moment untreatable, brain decay that begins in childhood."
Jack, Thomas's big brother

We Can't Wait. Childhood dementia takes a life every 11 minutes.

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Caleb lived with infantile neuroaxonal dystrophy (INAD). He died aged 8.

“Hope for a family like ours looks different. Hope that your child is not going to suffer. Hope that if he is in pain you will be able to tell us and you'll be able to treat it. Hope that his life will matter, and that it will have meaning. Hope that he can still smile. Our hope is different." 
Sam, Caleb's dad

We Can't Wait. We need hope. We need action now. 
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