// BBC UK NEWS — CRONACA
'When your child is dying you shouldn't have to beg for help'
Lila Dripps-Weir had a rare inherited metabolic disorder called Pyruvate dehydrogenase deficiency (PDH)
The parents of a severely disabled two-year-old child, who died in May, said they spent their daughter's entire life fighting for support for her life-limiting condition.
Lila Dripps-Weir had a rare inherited metabolic disorder called Pyruvate dehydrogenase deficiency (PDH), external, which affected how her body could break down food and drink.
Her parents want age restrictions removed on services such as a wheelchair-accessible vehicle and continence products for children like their daughter, who was dependent on them for her care.
The Department for Communities (DfC) said it "recognises the significant challenges faced by families caring for children with complex and life-limiting conditions".
Hayley Dripps described her daughter as "a very happy little girl"
Lila also had severe hydrocephalus, external, epilepsy and was registered blind and deaf.
Her mother, Hayley Dripps, described her as "a very happy little girl... the strongest person I've ever met in my life... courageous and had a smile that would light up a room".
But she said: "You just hit one wall after another.
"No matter how many medical support letters I had, no matter the long list of diagnoses she had, age was always a factor. They didn't look at her safety."