Burnley family of disabled two-year-old joins Newlife charity call to government to make disabled children a priority

One-year-old Esmie Butler from Burnley was diagnosed with a brain tumour at just two-months-old, but after enduring five major surgeries to remove as much of the tumour as possible and spending the first six months of her life in hospital, she is now waiting for an assessment to see if she is eligible for a specialist buggy – six months after being referred.

Doctors were unable remove all of Esmie’s tumour, so her future is uncertain – she is unable to sit up on her own, is struggling to develop head control and the left side of her body is particularly weak, making a high street buggy completely unsuitable.

Esmie urgently needed a specialist buggy that could support her safely and comfortably and prevent her condition further deteriorating, which would allow the family to leave the house to go to regular hospital appointments. But as they have no idea how long they will be waiting for an assessment date, her mum Sophie Bullas turned to Newlife, the charity for disabled children, for a specialist buggy through their Emergency Equipment Loan service.

Sophie said: “Without Newlife we’d be stuck. We would really struggle to get out of the house, but now we can easily go to her regular hospital check-ups and she can sit in this loan buggy if we go for a family meal as high seats aren’t supportive enough for her to use.

“Initially, advice we were given was just to prop her up, but that would just lead to further medical issues for her. The buggy from Newlife has extra chest straps which support her and ensure she doesn’t develop a curve in her spine.

“The hospital staff have been absolutely great and are doing their best within the system, but they are very understaffed. Luckily, because I work with children who have special educational needs, and because of Esmie’s Occupational Therapist, we’d heard of Newlife and were able to get in touch with them to apply for the loan buggy – I don’t know where we’d be without them.

“I don’t know many people that could afford to pay thousands for a buggy or wheelchair, especially as you need to keep getting new ones as they grow, and that’s just one item that a disabled child might need. It’s a lot of stress to constantly try to sort everything out all the time.”

Sophie doesn’t know how long they will have to wait for Esmie’s assessment and then for the buggy she needs, but she knows that paying for one privately isn’t an option, despite her and partner Connor both working full time.

Stephen Morgan, Newlife’s Director of Charitable Services, said: “Families face insurmountable challenges when seeking support, from not being sure who to turn to at the point of diagnosis, to navigating a complex system, as well as a lack of clarity on what equipment can be provided and by who.”

Newlife is now calling for the next Government to commit to establishing a dedicated Minister for Disabled Children, who will ACT: Accelerate equipment budgets; Cut assessment waits; and Tackle staff shortages.