NI health: ‘When your child is dying you shouldn’t have to beg for help’

One of the main problems the Cookstown family experienced was taking Lila out in the car, which had a huge impact on family life and their ability to attend hospital appointments.

In Northern Ireland, a child cannot qualify for the higher rate mobility component of Disability Living Allowance (DLA), external – which is required for the Motability Scheme – until they reach three years of age as it depends on a child’s ability to walk.

Lila could not roll, sit, or stand and, according to a paediatric physiotherapist, was completely dependent for all care.

She received a specialised buggy, but the family still needed a wheelchair-accessible vehicle to transport her and the buggy.

Hayley said this was “denied” to Lila “due to her age, not clinical need”.

Robert said not having a safe vehicle to transport his daughter in was “terrible” and he had to sit in the back of the car and hold Lila’s head up “just so she could breathe”.

A charity which helps disabled children did step in to assist and provided the family with a wheelchair-accessible vehicle, just before Lila’s second birthday. Her father said that was a “lifeline”.

“She was able to be safe and she got the life that she deserved eventually because she was fit to get out of the house,” her mother said.

Lila’s third birthday would have been on 1 August.

The family spent what turned out to be Lila’s final weeks of life filling in forms so she did not miss the deadline for applying for mobility DLA before her third birthday.

Hayley said she felt her daughter was not “entitled to basic human rights that other kids are entitled to because she was born different”.

“I would like the departments to work with healthcare professionals and look at diagnosis and clinical need and the expert opinions of medical professionals rather than age and a birthday,” she said.