A Letter From Haley’s Parents
Oct 2017, our Haley was diagnosed with Batten Disease, specifically CLN1. Our greatest fear was Haley going blind. Today we would consider that a blessing. Batten Disease is a rare inherited disorder of the nervous system. Today there is no known treatment or cure. Those affected suffer from progressive neurological impairment that leads to blindness, seizures, loss of motors skills, speech, and ultimately life.
She is just 8 years old. Haley lives her life as a song. She dances and sings when others might just watch. Her world is one of glitter, unicorns and magic. Batten Disease will steal that from her. We cannot just stand by and watch the song disappear from her soul.