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1/14/2017 Latest post:
Delaney is 14 and she attends Frankfort Middle School and lives in Carpendale, WV. Delaney enjoys going to school, socializing with her friends and art. Delaney's hobbies are music, horseback riding and enjoying trips to any place that serves food or ice cream. She loves to laugh and be around friends and family. On June 9, 2015, Delaney was diagnosed with Batten disease (CLN3). Batten Disease is a rare, fatal, inherited disorder of the nervous system. There is no known treatment or cure. Batten disease results in a shortened life span and those diagnosed have extensive needs for comprehensive medical care.
This page was developed to update you on Delaney's condition and also bring awareness to Batten Disease. More information on Batten Disease can be found at Batten Disease Support and Research Association, www.bdsra.org.