Mum of 3 kids with childhood dementia: a candid interview

Renee is mum to Hudson, Holly and Austin who all have childhood dementia caused by Niemann-Pick disease type C. In this candid interview, Renee generously shares some of the impacts of childhood dementia on her family. Renee is one of the many families working to generate greater awareness and action to help children with dementia. Childhood Dementia Initiative is very grateful to her for sharing her experience.
Childhood dementia is caused by over 100 under-researched genetic disorders that cause progressive brain damage. These conditions are terminal and children are born with them. A hallmark of childhood dementia is typical development followed by progressive neurocognitive decline. Each child’s experience with dementia is unique. In some instances, dementia symptoms can appear in the youngest of children and babies and progress quickly. While for other children, symptoms may not start until they are teenagers.
Childhood dementia is not new. Awareness of childhood dementia, however, is finally growing. This is due to all of the conditions that cause childhood dementia being brought together. When viewed together, childhood dementia’s enormous impact becomes impossible to ignore. Viewing childhood dementia in this way compels accelerated research, improvements in care, and inclusion of children in support services and dementia policies.
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