reveals how the couple established the organisation after losing their children Saoirse and Liam to Batten's Disease
Chloe had the rare degenerative illness Batten's Disease
and died earlier this month as a result of a chest infection.
Relatives, friends and supporters of Abigail Williams, who has a rare, debilitating condition called Batten's disease
, have raised thousands to pay for her to have stem cell treatment in China.
Mr Parry said the mother's entire existence was spent caring for her daughter who, tragically, has variant Batten's disease
The patent applies to Hurler's Syndrome and other lysosomal storage disorders, such as Fabry's disease, Gaucher's disease, Niemann-Pick disease and Batten's disease
, among many others.
He had a rare neurological condition called infantile Batten's disease
and was among the first children to be looked after at Robin House in Balloch, Dunbartonshire.
killed their son Robbie when he was just six.
I KNOW a gentle Asian couple in this city who have watched two daughters die of Batten's Disease
, the terrible condition that turns its victims blind, deaf, speechless, immobile and incontinent before death.
The two children had a rare and incurable neuro-degenerative disorder called late-infantile Batten's disease
It was set up by Barry and Carmen Daniels who experienced the need for 'home from home' care when their children Charly and Rhys, who later died, were in hospital with Batten's disease
Jackie and her husband, welder Kelvin, were devastated when doctors told them their then five-year-old daughter Llinos had been diagnosed with the rare and incurable Batten's disease
The film was mentioned in the House of Commons and parliamentary questions were raised about the funding given to Late Infantile Batten's disease