Families of affected children and three patient groups have worked together to produce heartbreaking and thought provoking videos to help get word out there. They have had the support of a pharmaceutical company, BioMarin, and Portland Communications.
Ollie was born healthy but has gradually suffered from cognitive decline. He can no longer speak or perform activities of daily living. He has childhood dementia caused by a metabolic disorder called Battens Disease. And his sister, Amelia, is also affected. Her parents know that she will also gradually regress.
Battens Disease, Niemann-Pick Type C and Mucopolysaccharidosis Type III all cause dementia in childhood. They are caused by different enzyme deficiencies that cause the build up of storage materials in the lysosomes of different organs (collectively this type of disease are known as a lysosomal storage diseases). Although these are different diseases they have some features in common common – including the loss of abilities that had developed in childhood. These symptoms include:
- Loss of speech
- Deteriorating swallow
- Visual impairment leading to blindness
- Hearing impairment leading to deafness
- Fine and gross motor skills
Similarly to dementia in the elderly there can also be memory loss, cognitive impairment, disrupted sleep and challenging behaviour. Ultimately young people affected by these diseases become totally dependent on families and carers.
Find out more about this awareness campaign at www.childhooddementia.co.uk
For more information about Battens Disease please click here
For more information about MPS III please click here
For more information about Niemann-Pick Type C please click here