The parents of Lila Dripps-Weir, a two-year-old who died in May, have spoken out about spending their daughter's life fighting for support for her complex, life-limiting condition. Lila had Pyruvate dehydrogenase deficiency (PDH), severe hydrocephalus, epilepsy, and was registered blind and deaf.
Her parents, Hayley Dripps and Robert Weir, are calling for age restrictions to be removed on services such as wheelchair-accessible vehicles and continence products. They stated that Lila was denied a wheelchair-accessible vehicle due to her age, not clinical need, and faced difficulties obtaining continence products despite her size.
In Northern Ireland, children cannot qualify for the higher rate mobility component of Disability Living Allowance (DLA) until they are three years old. The Department for Communities (DfC) acknowledged the challenges faced by families but stated it is not aware of any plans to review the age restrictions for mobility benefits. The DfC added that the minister would be willing to meet the family and raise the matter with the UK government.
Linda Dillon, a member of Stormont's health committee, suggested that the health and communities ministers could quickly change age restrictions to help families with children who have complex conditions.