Brief summary: I have a sick brother who is 9 years old and has Late Infantile Batten Disease. He can no longer walk, talk and is bed-ridden. Just so disheartening and emotionally draining. Would like to offer and receive support for this distressing disease.
Brief summary: I am the mother to Ali, whom is 4 years old. Ali was diagnosed with Battens disease on July 15, 2011 a day that we will never forget. Battens disease is a rare, fatal incurable terminal neurological disease.