© 2018 by Rare Sisters

  • Facebook Social Icon
LEARN MORE ABOUT 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.

To learn more about Batten Disease, please visit these sites:

www.beyondbatten.org

www.bdsra.org

ABOUT THE RARE SISTERS

Cecilia

Cecilia is the oldest of the sisters.  She is a spirited girl that loves to be active and outside.  She has a kind and generous heart.  She is affected with Batten Disease.  Her vision has already declined, and continues to do so rapidly.  She has also had difficulty in school and with her speech.

Lilly

Lilly is the second of the five sisters.  She is a sweet and calm presence.  She loves little things and dancing.  She is also affected with Batten Disease.  Her vision has started to decline, and she has been diagnosed with epilepsy due to her Absence Seizures.

Nora, Ruthie, & Zelie

Nora, Ruthie, and Zelie are the little sisters.  They are all spirited little girls. Nora is unaffected, and Ruthie and Zelie are just carriers of Batten Disease.  Their lives will be shaped by their big sisters' diagnoses, and they will walk with their sisters on their Batten journey.  

OUR STORY
Summer 2018 
Spring 2019    
Fall 2019