Winnie’s story: Recovering with the Ryegate Centre team

“We consider our family to be hugely blessed when it comes to the care our wonderful ten-year-old has received, and this hasn’t changed over the lockdown period.”

Come and meet Winnie – and Dusty!

She has been under the care of lots of teams across Sheffield Children’s for a number of years.

Winnie was originally diagnosed with hereditary spastic paraplegia – a rare inherited disorder that causes weakness and stiffness in the leg muscles – in 2012 and referred to our therapy services.

This disorder meant Winnie needed to use a K-walker for short distances, and also a wheelchair. Over the next eight years, Winnie took part in a range of therapy sessions focused on getting her back on her feet. This has included sessions spent strengthening specific muscle groups and practising standing with her Physiotherapist at Ryegate, Fran, plus time in the hydrotherapy pool.

In May 2020, Winnie was due to have an operation – bilateral derotation osteotomies – where both hips are broken, repositioned and then fixed back into place with plates and screws. Due to COVID-19 though, this operation was moved to July 2020.

Winnie’s mum, Libby said: “We were naturally nervous about such a big operation, and the virus, but we had plenty of opportunities to see our amazing surgeons – Mr Evans and Miss Fishlock – prior to admission and felt very confident about the precautions being taken to ensure her safety. We isolated before the operation and Winnie had a COVID-19 test. The operation went without any problems and I was lucky enough to be able to stay every night in hospital with Winnie.

“The anaesthetist and nurses were absolutely outstanding. Even though they had to wear full PPE and we couldn’t see their smiles, they made every effort to be extra friendly, make jokes and explain everything they had to do and gave Winnie so much care.”

To help keep the number of people at Sheffield Children’s as low as possible during the COVID-19 pandemic, the Trust has a one visitor policy for all areas – but that didn’t stop one magical visitor.

Libby added: “Winnie lost a tooth whilst in hospital and unbelievably the tooth fairy managed to find out and leave gifts in return for Winnie’s tooth!”

As well as the tooth fairy, Winnie met Physiotherapist Alex who gave her a regime to stick to while they bonded over their love for their little dogs! After leaving the hospital, Winnie’s care continued with home visits and sessions at Ryegate Children’s Centre.

“Winnie had some special fluffy boots to protect her from pressure sores, and some gaiters – like cricket pads – to wear to stretch out her muscles. We had a hospital bed delivered, slide sheets, pressure relieving cushions – you name it, if she needed something the amazing team at Ryegate were on it like a shot.”

“When Winnie was up to it she had some hydrotherapy sessions again. She absolutely loves being in water and is desperate to get back to her swimming lessons when lockdown is eased – so these were appreciated so much. The pool is such a pleasant place for therapy. It’s warm, clean and accessible.”

The main part of Winnie’s recovery is now physiotherapy. During the COVID-19 pandemic, her care has varied with sessions over the phone or face-to-face at home, school and at Ryegate Children’s Centre – with PPE precautions.

Libby added: “Prior to lockdown Winnie also accessed some sessions with a psychologist. Initially these were at Ryegate, but they moved to video and telephone appointments and remained at the same high quality and she really made significant progress during this time.”

Thanks for sharing your story Winnie, we hope you’ll be swimming in the pool again soon!