OUR STORY October 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 rate 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 motor skills, 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 glitter, unicorns and magic. Batten Disease will steam that from her. We cannot just stand by and watch the song disappear from her soul. OUR COMMITMENT The saying "it takes a village" has never been more true. We are committed to hope... we are committed to love... we are committed to finding a cure. Please join us on this journey and help us find a solution for not just us but all those families out there coping with this disease. OUR FIGHT The cost to research and quickly bring FDA approved clinical trials and gene therapy treatments to children with Batten Disease is high. We need to raise more than $900,000 in 2018 and another $1.5 to $3 million in 2019. And we need to do it quickly. With a goal of human trial gene replacement therapy in 1-2 years we have no time to spare. SUCCESS Our success will be realized when Haley and children like her will have their symptom progression slowed, stopped and reversed, leading us to find a cure.