Cats cradle
What is Batten Disease?
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 describe all forms of NCL. The basic cause, progression, and the outcome are the same. The forms of NCL are classified by age of onset 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 Juvenile Batten Disease become blind, bedridden, and unable to communicate. Juvenile Batten Disease is always fatal by the late teens or twenties.
Batten Disease is not contagious or, at this time, preventable.
Please follow this url to learn more about how you can help and meet some very special people. This page is dedicated to some dear sweet friends.
-
Battens Disease Support and Research Association
Please get to know Bridget and Clyde and also learn about their sons Steven and Eric.
Included on this page is their email addy and I know they would appreciate hearing from you. Their only two children, these little boys were diagnosed with Batten's Disease. They lost Steven Oct.24,1994. I ask you to give these special people your support and prayers as they walk this difficult path that life has put before them.
This is Bridget, Eric, Steven and Clyde…by Snowwhite!
Steven
Bridget and Clyde's email addy
If you would like to drop me a line
I made this page for Bridget, Clyde and Eric
but should you want to contact me,
here is my email address too...Susan
