Auntie Em, is aunt to Ollie, 9, and Amelia, 7, who both have late infantile Batten disease. She talks movingly in this video about the Aunt’s perspective. She talks of her “heart shattering” and the complex guilt family members can feel, that they cannot do enough to help. She brings home the “snowball” effect Batten disease has on the whole family. The Carroll family have been hugely active in the community and have their own family foundation Ollie’s Army, raising extensive awareness of Batten disease @olliesarmybattlingagainstbattens @olliebobsarmy