Anyone heard of Battens Disease?

[Spongebob]

My Mum's next door neighbour's little grandaughter has just been taken into hospital with suspected Battens disease and apparently its fatal. Anyone ever heard of it?

Holy shit, how very very very sad for them, its not a ncie illness at all

Found this :( :( :(
Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL. The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but are all genetically different.

Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal.

Batten Disease is not contagious or, at this time, preventable.

I know a bit about it- truly awful I'm afraid :(

The children's trust at Tadworth certainly used to care for a group of children / young adults with it, as the others have said , it is not a nice thing at all.

I did my Bsc dissertation on this after I worked with a boy with this condition. My thoughts and prayers are with them. The British Battens disease association website is good, lots of american sites available too.

The child is in hospital now and apparently they are doing blood tests and taking cultures and will know for sure by Thursday. I feel so so sorry for the family...my Mum says they are distraught. Im praying for them but also thanking my lucky stars for a healthy child!