Infantile Spasm / Hysparythmia

[murni]

Hiya,

I am wondering if there would be a mum who has a child with infantile spasm?
I had a brother who became mentally retarded and vegetable as the consequence of hysparyhtmia. He only could make gurgles and unresponsive to his parents and siblings. He had no coordination although could walk. He passed away at 18 years old in 1988. I now are very keen to learn more about the seizure disorder and share my recollections of looking after him.

I searched on the internet and found no stories at all from the UK. I got some from USA, yet they were much more healthier than my brother.

Please contact me if you would like to share your stories. Thx.

[murni]

my email is [email protected].

[darlingbud]

try here:

www.epilepsy.org.uk/info/infantile.html

No experience myself but wanted to try to help. Maybe contacting this organisation may be able to put you in the right direction. Alternativelt, search on google under UK only and see what it brings up.