A disabled children’s charity stepped in to help a terminally ill ten-month-old when Nottinghamshire health and social care’s red tape meant they couldn’t act quickly enough.

Courtney Hutchinson from West Bridgford has the rarest form of muscular dystrophy called Walker-Warburg Syndrome. The progressive condition affects the development of all muscles and has a maximum life expectancy of age three, so every moment Courtney has with her family is precious.

Courtney can’t sit up or control her own head and struggles to breathe if she’s not in the right position. Nottinghamshire NHS assessed her, but admitted they couldn’t provide a suitable specialist seat that wouldn’t put her in danger.

Faced with enduring further wait times in applying to Nottinghamshire County Council for a seat, professionals involved in her care instead contacted Newlife the Charity for Disabled Children for help. The charity recognised the urgency and provided a £604 specialist P Pod seat within a week.

Mum, Susanna Oram, said: “Without a specialist seat Courtney’s dad, Jean-Paul, or I have to hold her all the time. If we need to do something quickly we have to put her on the floor, but all she can do then is stare at the ceiling.”

“Having the right seat means quite simply we don’t have the constant worry that she’s in pain or struggling to breathe.

“It fully supports her head and even gives her the independence to sit up on her own. Although she is partially deaf and partially sighted, she’s aware of what’s going on around her and she’s now able to be more involved with us, which is so important for us as a family.”

Newlife is the leading charity supplier of specialist equipment for disabled children and provides a range of services to support both the physical needs of the child and wider emotional needs of the family.

Newlife’s Head of Charity Operations Stephen Morgan said: “Courtney shouldn’t have to go without the equipment she urgently needs for the sake of £604.

“Thankfully in this case we were able to help quickly, but it does demonstrates a need for local clinical commissioning groups and local authorities to review their practices so they are better able to meet the emergency needs of disabled and terminally ill children.”

“With 1.1 million disabled children now in the UK, budget cuts and restrictions on NHS and Council spending means more and more families have no alternative but to turn to charity’s like Newlife for help.”