'My super-rare daughter Summer is falling through NHS cracks'

Summer Calvin desperately needs a well-fitted wheelchair to prevent spinal damage but has "fallen into a gap" in NHS provision. The nine-year-old is one of only around 10 children in the world with a genetic disorder called HERC1. Her mum, Larissa Evans, said: "It essentially leaves her with a very profound learning disability and development delay.

"She can't walk on her own, she can't talk. She needs help with self-care and has no awareness of danger." The Express Christmas appeal this year is supporting Whizz Kidz, a charity that provides wheelchairs for children whose needs are not met on the NHS.

Summer's family asked NHS wheelchair services for a new chair in 2022 after she outgrew her previous one.

But Larissa, 30, said it deemed the cost of meeting her needs too high and only offered her a less suitable chair. She explained: "Summer is super rare so the kind of chair she needs is not standard stock.

"She's very active but she can't walk so she falls into a gap where wheelchairs are concerned. Her chair is her legs. It's her only way of getting about and she spends most of her day in her chair.

"Imagine if you had to sit in a chair all day and it was uncomfortable. You wouldn't be happy."

Summer, of Stoke-on-Trent, is on Whizz Kidz waiting list. She is currently using an emergency wheelchair loaned to her by another charity but it has not been fitted to her precise requirements.

Larissa added: "She's at huge risk of scoliosis with her condition. Her spine is healthy at the moment but we've worked so hard with physiotherapy throughout the course of her life.

"The last thing we want is to ruin all that hard work and progress with an unsuitable chair that makes her spine worse."

The NHS seems to have a "one size fits all approach" and it is frustrating to have to fight for essential equipment Summer needs, Larissa said.

She added: "She is so unique, she's never going to fit into that box. She's the only person with her condition in the country.

"Every piece of equipment she has ever had has been a bit of a fight, because it's not standard equipment. There's a massive gap in statutory services for children like her."

An NHS spokesperson said: "We know how crucial timely access to a wheelchair is for all patients, which is why the NHS offers personal wheelchair budgets for people with a long-term condition to choose a wheelchair that meets their needs.

"But there is clearly more to do and we are continuing to work with local commissioners and wheelchair service providers to improve access and the experiences of young wheelchair users."

• You can donate to the Express Christmas appeal with Whizz Kidz here. Or send a cheque in an envelope marked "Daily Express" to Whizz Kidz, 30 Park Street, London, SE1 9EQ.