Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children followed by personality changes, behavioral problems and slow learning. Seizures commonly appear within 2-4 years of vision loss. However, seizures and psychosis can appear at any time during the course of disease. Progressive loss of motor functions (movement and speech) start with clumsiness, stumbling and Parkinson-like symptoms; eventually, those affected become wheelchair-bound, are bedridden, and die prematurely.
Meet the Bensons
In 2008, Beyond Batten Disease Foundation was formed by Charlotte and Craig Benson in response to their daughter Christiane’s diagnosis of Batten disease and supported by a community who shared the belief that something had to be done. Christiane is now 13 years old and lives in Austin, TX with her parents and her little brother, Garland.
Meet the Herndons
In 2009, Missy and Wayne Herndon founded The Will Herndon Research Fund (HOPE) to raise awareness and support for research into finding a cure for juvenile Batten disease. This effort began in honor of their son, Will, who was diagnosed at the age of 6. Will is now 13 years old and lives in the Woodlands, TX with his parents.
Meet the Watsons
The Luke and Rachel Batten Foundation was formed in 2001 to honor Luke and Rachel Watson. Luke was born September 17, 1992 a healthy happy baby. Sixteen months later on January 28, 1994 Rachel arrived. The Watson family was complete. Luke was diagnosed with juvenile Batten disease in February of 1999. In June of that same year Rachel was also diagnosed. Rachel passed away in August 2016.
Meet the Allmans
Tyler Allman was diagnosed with Batten disease in 2009. In 2014 his parents, Heather and Royer Allman started a go fund me page called “Team Tyler” to raise money in support of Batten disease research. Tyler is now 15 years old.
Meet the Sikorras
Lori and Joe Sikorra found out that both of their sons, John and Ben, had Batten disease. John sadly passed away in September of 2015. Ben recently fulfilled a dream of his to attend college enrolled as a freshman at California Lutheran University (CLU) this fall. The Sikorras live in Westlake Village, CA, near Los Angeles.
A Mother's Story
As a mother of a child with a rare disease, Charlotte Benson has a unique perspective and message.
Her inspiring story combined with her talent for connecting to the hopes, fears, triumphs and struggles we all face in our lives.
Share Your Story
What started as the inspiration of one child has now become the voice for all people affected by juvenile Batten disease.
Share your story with us and let your voice be heard.
If your child has been diagnosed with juvenile Batten disease, please know that you are not facing this challenge alone.
This map shows the location of other families affected by Batten disease from around the world.