For Lisa Hover and her husband Andy, life on the Hampshire Dorset border with their family of four children seemed idyllic. Even when a routine sight test on their daughter Annabelle as she started Primary school picked up an abnormality it all seemed manageable. But the abnormality turned out to be macular degeneration and early sight loss, which itself masked a more severe and life shortening genetic condition. The diagnosis of Batten disease changed everything. And yet, with no cure available, and physical and mental decline forecast, Annabelle lead the family in demanding everything from her limited life span. That included setting up a charity, Batten fighters forever or BFF ( battenfightersforever.com ), continuing her Girl Guiding and going skiing. Lisa talks to Sian about the challenges, the joys and the sadness - and particularly about Annabelle's desire to have a White Christmas will all the family.

Producer; Tom Alban