Youngster with ultra-rare condition given special seat after year-long wait

A girl with an ultra-rare health condition has waited more than a year for a special car seat to keep her safe on the road.

Friday, 13th October 2017, 3:49 pm
Updated Tuesday, 12th December 2017, 9:10 am

Kyra Lodge, 9, was one of thousands of disabled children who are being refused health and social care funding for equipment to improve their lives.

Kyra, of Fitzwilliam, has cerebral palsy, autism and is also one of just two youngsters in the world with the blood disorder methemoglobinemia.

She needed a special seat to keep her secure in the car as she travels to medical appointments.

But mum Heather Storey, 28, had to use a makeshift tupperware box to cover the buckle to stop Kyra undoing it after the equipment was deemed non-essential.

She first turned to Newlife, a charity which fundraises for equipment for disabled and terminally-ill children. Cash for the car seat has now been found through the disabled adaptations scheme Motability.

Mrs Storey, 28, said: “I cried when they told me we had got it. It means we’ll be able to go out safely in the car.

“I don’t think a lot of people realise how much of an issue it is for us as a family.

“Kyra has to go to a lot of appointments and she has just joined a disabled football team.”

Newlife believes that one in three disabled and terminally-ill youngsters are not being provided with the essential equipment they need.

The charity said it hears daily from families whose children have to sleep on the floor because they cannot get a specialist bed or miss school after being refused a wheelchair.

The UK has been criticised in a report by the United Nations which found that the government was not doing enough to ensure the rights of disabled people to live independently.

Karen Dobson, a consultant nurse with Newlife, said: “It’s tragic, but children and their families are facing refusal for equipment every day.

“They face 12 months or longer just for an assessment and some are refused an assessment altogether.”