WHAT IS BATTEN DISEASE
CLN3, is a type of Batten disease. It is a rare, fatal, inherited disorder that primarily affects the nervous system. After 4 to 6 years of normal development, children with this condition develop vision impairment, intellectual disability, movement problems, speech difficulties, and seizures, which worsen over time. Blindness occurs by late childhood or adolescence. Also around age 4 to 8, children start to fall behind in school. They have difficulty learning new information and lose previously acquired skills, they loose the ability to speak in complete sentences. Movement abnormalities often develop in adolescence. Over time, affected individuals lose the ability to walk or sit independently and require wheelchair assistance. The life expectancy is late teens to early twenties. There are no treatments, no cures, and very little research for CLN3 Batten disease.
The Rare Sisters, Cecilia and Lilly Fries were diagnosed in early 2018. The outpouring of support from their community was the inspiration behind the creation of the the Rare Sisters Batten Foundation. The Fries family was so humbled and overwhelmed with the generosity of those near and far that were touched by the diagnosis that they wanted to create a foundation to further help fund medical research and profoundly help other Batten families that face the unimaginable changes that this diagnosis brings. Often the changes that come with this diagnosis are financially difficult to overcome, and also necessary to care for their affected children.