'We'd do anything' - parents' £14k appeal for daughter's quality of life

Bethany Shaw, from Brandon, suffers with cask gene mutation and scoliosis

Bethany Shaw, from Brandon, suffers with cask gene mutation and scoliosis - Credit: David Shaw

A couple have detailed the ongoing battle to give their severely disabled daughter a better quality of life as they fight to raise £14,000 for a device to help her mobility.

Bethany Shaw, from Brandon, suffers with a condition known as cask gene mutation, which causes brain malformation and intellectual disability.

As a result, the 17-year-old has never spoken a word, walked, sat up or stood unaided. 

Bethany Shaw, from Brandon, with her family. The 17-year-old suffers with cask gene mutation and scoliosis

Bethany Shaw, from Brandon, with her family. The 17-year-old suffers with cask gene mutation and scoliosis - Credit: David Shaw

"Bethany had a check-up at nine months old and we were told something was not right," her mum, Lisa Baker, said.

"She just wasn't hitting her milestones and they thought there might be developmental delay. 

"Bethany is my first child so I had nothing to compare her to. I had no reason to think anything was wrong."

A one-year scan showed Bethany had a small brain and her parents were informed she would be severely disabled.

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It wasn't until she turned 13 that her disorder was properly diagnosed. 

Bethany Shaw, from Brandon, suffers with cask gene mutation and scoliosis

Bethany Shaw, from Brandon, suffers with cask gene mutation and scoliosis - Credit: David Shaw

And now, the teenager's illness has been compounded by a diagnosis of scoliosis in the spine, as well as gastrointestinal problems which have seen her vomit blood. 

But Miss Baker and Bethany's dad, David Shaw, are desperate to improve her fortunes as they raise money for an Innowalk, a device which mimics bodily movement in sitting and standing positions.

Allowing Bethany to stand and sit up more frequently would also make her less likely to get chest infections, a common result of scoliosis. 

"At the moment she is just in her chair all the time," added Mr Shaw. "Most of us take it for granted that we can walk around, and this bit of kit would make her more physically able to do things. 

"We love the bones off Bethany and would do anything for her. I would gladly lay down in traffic to improve her quality of life. 

"Bethany is so innocent and, when she smiles, you can tell she wholeheartedly means it. She lights up the room and we just want that for as long as possible."

Innowalks come at a cost of £25,000 and the family has started a fundraiser to generate the remaining £14,000 they need. 

Mr Shaw and Miss Baker are welcoming donations of any size via just4children.org/children-helped2021/help-bethany-to-walk.

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