Seven-year-old's wait for wheelchair

Larissa (right) said: "It doesn’t seem fair that it is such a battle."

A seven-year-old child with a near-unique genetic condition has waited nearly two years for a suitable wheelchair.

Summer, who lives near Newcastle-under-Lyme, has been waiting for the chair since September 2022.

Children's disability charity Newlife, which is based in Cannock, Staffordshire, claimed she was not alone, with 44% of West Midlands disability equipment services having their budgets cut.

The Department of Health and Social Care said it could not comment due to the pending period for a general election.

Summer's condition affects the gene Herc1 and she is the only child with the syndrome in the UK.

It means that Summer is abnormally tall for her age, but cannot walk or speak.

Her mother, Larissa, said they had been in discussions with Staffordshire and Stoke Wheelchair Services since September 2022, and when a previous wheelchair that she had outgrown broke last June, they became desperate.

She said: “It’s the bare minimum that she needs and she is entitled to it.

"Without it, she couldn’t go to school or leave the house. It doesn’t seem fair that it is such a battle."

"It’s hard enough focusing on everything else. You don’t want to be weighed down or distracted by a two-year fight for a suitable wheelchair.”

Summer has had to hire a wheelchair from Newlife and has had to renew the loan twice.

Half waiting for assessment

A Newlife report entitled Fight for Our Future said only 40% of parents think their children had the equipment that they need.

It said the number of disabled children has doubled in recent years and there is a shortage of professionals.

Half of all children nationally are waiting a year for an assessment, it said, and 75% of professionals don’t believe that they have the equipment that they need.

Director of Charitable Services, Stephen Morgan, said that the charity used to fund research, but had to stop because of the increasing need to subsidise specialist equipment.

He said: “These services are absolutely critical to help some of the most vulnerable children in our society and yet these services are being cut.

"It’s not good enough that some of our most vulnerable families are being failed, but that’s the reality.”

Staffordshire and Stoke wheelchair services and the company which provides the service, AJM, said they could not comment on individual cases, but would contact Summer’s family and reassess her case.

AJM’s customer services manager, Guy Eatherington, said the company sympathised and that similar reports had been produced by the Wheelchair Alliance and Whizz Kids.

The Department of Health and Social Care said: “We’re in a pre-election period and we’re unable to comment – given the nature of the report and calls to policy makers.”