A FORMER gymnast with a severely twisted spine is facing a race against time to raise money for life-changing surgery – after the NHS stopped offering the op.
Lucie Clarke has been diagnosed with a rare double twist in her spine, caused by severe scoliosis.
It means her rib cage is being crushed, leaving her in constant agony.
The 15-year-old is reliant on painkillers and is unable to walk, stand or sit without difficulty, such is the severity of her condition.
She was due to have surgery on the NHS in May but it was cancelled when doctors discovered she has junctional ectopic tachycardia, a heart condition.
By the time she had undergone surgery to treat that, the NHS had stopped funding the spinal correction procedure called vertebral body tethering.
As a result the family, who live in Gloucestershire, have resorted to fundraising for treatment in the US.
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Lucie requires a minimally invasive surgery which involves screws being inserted into each vertebra and tethered with a cord before being pulled taut.
The procedure will alleviate much of the pain she's suffering and transform her life – but she needs the op to be carried out before she finishes puberty.
Since launching the appeal in December, Lucie and mum Debbie have raised £16,000 towards their mammoth target.
Lucie's mum, business owner Debbie Clarke, 37, said: "Before this she was just a normal teenager. She was really active, fit and healthy.
"Now she can't walk for more than a few minutes, she can't sit properly – everyday things that we take for granted, she can't do.
"She is in excruciating pain and it gets her down. She gets upset and frustrated.
"She just wants to be whatever 'normal' is. It's awful to see.
WHAT IS SCOLIOSIS?
Scoliosis is the abnormal twisting and curvature of the spine.
It can develop at any age, but is most common in kids aged 10 to 15.
It's also more likely to affect girls than boys.
In the UK, around three or four in every 1,000 kids need treatment for scoliosis.
Signs you could have scoliosis include:
– a visibly curved spine
– one shoulder that's higher than the other
– one shoulder or hip that's more prominent than the other
– clothes not hanging properly
– a prominent ribcage
– a difference in leg length
People living with scoliosis will often suffer back pain, as a result.
In eight in every 10 cases, the cause of scoliosis is not known.
However, a small number of cases are caused by other medical conditions, including cerebral palsy, muscular dystrophy and Marfan syndrome.
In rare cases babies are born with scoliosis, as a result of a problem with the development of the spine in the womb.
Treatment for the condition depends on a patient's age.
In very young kids, treatment is often not necessary because the condition can improve as the child grows.
In older kids, common treatments are wearing a back brace, or surgery to straighten the spine.
Source: NHS Choices
"If I could take it away and be the one suffering instead of her I would."
The mum-of-two added: "Being able to have this operation will help her get her life back on track and enjoying life again.
"She isn't enjoying it at the moment.
"The surgery is the answer to all our prayers – we just need to raise the funds.
"Without help there is no change we could afford it. This is our only option. We will do whatever it takes to make it happen."
Local businesses and well wishers have so far helped the family raise £16,000, but they need to raise £175,000 to cover the cost of the treatment and travel.
To donate visit Lucie's GoFundMe page here.
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