Mum Begs for Help as Daughter Dies Due to Age Rules

A mother from Northern Ireland has spoken out about the devastating impact of age-based restrictions on accessing support for her terminally ill daughter. Hayley Dripps' daughter, Lila, who suffered from severe hydrocephalus and a rare inherited disorder, passed away in May 2026 at the age of two.

Despite Lila's profound and complex needs, her parents were told she was too young to receive crucial mobility support and continence products. This led them to spend £800 on a specialist car seat, which eventually became inadequate. The family claims they were informed a wheelchair-accessible vehicle was the safest transport, but Lila had to be three years old to qualify.

Hayley described feeling like she was 'practically begging for basic help' while her daughter was dying, emphasizing that children with such conditions cannot afford to wait. The lack of timely support, including continence aids, caused significant distress and forced the family to travel to another town for supplies.

Lila required 24-hour care, and the process of obtaining essential support took a toll on Hayley and Robert's well-being, consuming precious time that could have been spent making memories. The Department for Communities (DfC) stated that parity is maintained with the Department for Work and Pensions and there are no current plans to review age restrictions for mobility. Health and Social Care (HSC) noted that continence products are provided to children aged five and above after a thorough assessment and support program.

Hayley is now advocating for a system that reviews children's needs based on their individual circumstances, not solely on age, through her petition 'Lila's Legacy'. Lila passed away in her mother's arms on May 31, 2026. In her final weeks, the parents were focused on completing DLA forms before Lila's third birthday.