Dying Child Denied Mobility Aid Due to Age, Not Need

A Cookstown family experienced profound distress as their young daughter, Lila, who had been diagnosed with a terminal illness, was denied essential mobility support due to strict age regulations. In Northern Ireland, the higher rate mobility component of Disability Living Allowance (DLA), a prerequisite for the Motability Scheme, is not accessible until a child reaches three years of age, as it is contingent on a child's ability to walk.

Lila, who was unable to roll, sit, or stand, was entirely dependent on care, according to a pediatric physiotherapist. Her mother stated that the required wheelchair-accessible vehicle was 'denied' to Lila 'due to her age, not clinical need.' This lack of appropriate transport significantly impacted the family's ability to attend hospital appointments and Lila's overall quality of life. Her father described the situation as 'terrible,' recalling holding Lila's head to ensure she could breathe while traveling in their car.

Fortunately, a charity intervened shortly before Lila's second birthday, providing the family with a much-needed wheelchair-accessible vehicle, which her father described as a 'lifeline.' This assistance allowed Lila to safely leave the house and experience a better quality of life during her final weeks. Lila's third birthday would have been on August 1, and her family spent her last weeks completing forms to meet the DLA mobility deadline before this date. Lila's mother expressed that her daughter was not 'entitled to basic human rights' simply because she was born different, urging departments to consider clinical need and expert opinions over age-based criteria.