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         

© 2020 by Rare Sisters Batten Foundation

a 501c3 Non Profit Organization Tax ID 84-44-06415

PO BOX 746561

Arvada CO 80006

foundation@raresisters.org

303-842-2680

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