Batten Disease is a RARE, fatal, inherited disorder that affects
the Fries Sisters. Learn More

On January 3rd, 2018, Cecilia and Lilly were diagnosed with CLN3 Batten Disease.  Batten disease is a neurodegenerative disorder.  There is no treatment, there is no cure, it is fatal.  It is usually first diagnosed with vision loss.  Eventually, they will develop seizures around age 9.  Dementia symptoms including mood and behavior changes will present.  Their muscles will weaken to the point where they will no longer be able to walk or talk and will be bedridden.  Eventually, they will need a feeding tube as they will no longer be able to feed themselves.  And then, eventually, they will die.  The lifespan for this horrible disease is late teens to early twenties.   Join us here to follow our journey.


We want to keep you updated with our family and what is going on with our Batten girls.  Here's our blog.  You can subscribe and never miss a post.

Meet the inspirational girls Cecilia & Lilly, and learn more about Batten disease.

RS Logo and Beyond Batten Logo

Donate to the Rare Sisters Batten Foundation.  Have an idea for a fundraiser?  We'd love to hear it.

Rare Sisters Gala 2019-186.JPG

Shirts, mugs, headbands, and more.  All Proceeds support the Rare Sisters Batten Foundation.

Lilly and Cecilia Laughing