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.
If a UK Support group is available for this condition you can access their details by clicking the above link, search for the condition and click on the "Is there support?" section.
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