What is Juvenile Batten Disease?

Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties.

Welcome to Operation: Faith, Hope, & Love

Operation Faith, Hope, & Love

January 2007 changed our family forever.  We learned that our two first cousins were diagnosed with a rare, fatal disease called Juvenile Batten Disease.

Instead of just being sad and scared – we asked our Mom how we could help make them get better.

We are hosting our first ever fund-raiser to help fund the research for a cure!!

100% of all our profit will go directly to the Batten Disease Support and Research Association (www.bdsra.org)

Friday, August 1, 2008 – we are hosting a dinner theater at Clearwater Country Club in Clearwater, Florida.  There will be dancing, singing, a special fashion show featuring kids the age of our cousins and, of course, a fabulous Country Club quality dinner buffet!  Contact our mom, Nancy Garrison to make your reservation now (only $30 a ticket).  (727) 267-0201 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .  We need your help!  This is a genetic disease and is continuing to be passed through the DNA of our family and many others around the world. We need to help find a cure to save our cousins and the future generations of our family! Thanks!

Kylee Faith & Macey Love

Kylee & Macey