‘My super-rare daughter Summer is falling through NHS cracks’ | UK | News
Summer Calvin desperately needs a well-equipped wheelchair to prevent spinal damage but has “fallen through the gap” on NHS services. The nine-year-old is one of about 10 children in the world with the genetic disorder called HERC1. His mother, Larissa Evans, said: “This condition leaves him with profound learning disabilities and developmental delays.
“He cannot walk or talk on his own. He needs help with his personal care and is not aware of the danger.” This year’s Express Christmas appeal supports Whiz Kidz, a charity that provides wheelchairs to children whose needs are not met by the NHS.
Summer’s family asked NHS wheelchair services for a new chair in 2022 because she had outgrown her previous chair.
But Larissa, 30, said the cost of meeting her needs was too high and she was only offered a less suitable chair. He explained: “Since summer is so rare, the type of chair he needs is not a standard chair.
“He’s very mobile, but he can’t walk, so he falls into a gap when it comes to wheelchairs. His legs are his chair. That’s his only way of moving, and he spends most of his day in his chair.”
“Imagine having to sit in a chair all day and it being uncomfortable. You wouldn’t be happy.”
Summer, from Stoke-on-Trent, is on the waiting list for Whiz Kidz. He currently uses an emergency wheelchair loaned to him by another charity, but it does not suit his precise needs.
Larissa added: “He is at great risk of scoliosis due to his condition. His spine is healthy now but we have worked hard on physiotherapy throughout his life.
“The last thing we want is to ruin all that hard work and progress with an ill-fitting chair that will make her spine worse.”
Larissa said the NHS seemed to have a “one size fits all approach” and it was frustrating to have to fight for the essential equipment she needed over the summer.
He added: “He’s so unique he’ll never fit into that box. He’s the only person in the country with that condition.”
“Any equipment he had was a bit of a challenge because it’s not standard equipment. There’s a huge gap in legal services for kids like him.”
