Sunday, 22 September 2019
A GIRL is to undergo a £35,000 operation to mend her spine so she can continue to dance and play sport.
Orla Astles-Jones, 12, from South Stoke, has scoliosis, a sideways curvature of the spine, and kyphosis, which makes her back appear hunched.
She was diagnosed last year when her posture suddenly began to deteriorate.
The cause is unknown but the condition is more common in girls than boys, especially those who are naturally more flexible.
Orla, a pupil at Langtree School in Woodcote, loves dancing and gymnastics but can no longer enjoy these unless she has the procedure, which will be carried out by a specialist in London on September 30.
She was scheduled for an operation to fuse 13 of her spinal discs together — the only corrective procedure available on the NHS — but this would have left her unable to live an active life.
Her mother Nicola set out to raise £15,000 for a private operation in America in which an internal brace would have been installed along Orla’s backbone.
This would have gradually reshaped it during her teenage years while allowing her to enjoy sports and dancing. However, when Orla flew out for an initial consultation last month, experts said her condition had worsened and they could no longer help.
Mrs Astles-Jones then found the specialist who will fuse the upper six discs and install a smaller brace along the lower section of her spine.
The operation will be followed by a three-month recovery period.
Mrs Astles-Jones said: “When the doctors said they wanted to fuse Orla’s spine, I thought that was rather radical for a girl who’s only 4ft 7in and not quite 13 years old.
“I wasn’t too happy with the idea and went away to do some research.
“The internal brace was a good option for patients who are still young and flexible but unfortunately her curve had progressed very quickly and the surgeons in America said she was too far gone for that.
“The specialist in England can fuse the upper half in the chest region while still leaving some flexibility.
“He’s one of the few in this country who can carry that out but it’s not being funded by the NHS. Orla’s condition is very, very severe and it’s only going to get worse so the NHS doctors at Nuffield Orthopaedic Centre support our decision and say she needs to be treated as soon as possible.
“I realise that we’re incredibly lucky to have a free National Health Service but unfortunately they only have one treatment and while it would have been effective, it would have severely affected the quality of Orla’s life.”
Orla used to take part in Goring’s annual fun run Hairy Legs and in sports days at Goring Primary School.
She has also been a member of the Green Room Collective dance school in Streatley for more than six years and regularly appeared in its show. She was also a member of Kennylands Gymnastics in Sonning Common.
She had to stop these activities as they caused her back pain.
Mrs Astles-Jones, who also has a son Tristan, 16, said: “Nobody at Orla’s old school could believe it when she was diagnosed as she’d always been the runner, the dancer, the ‘sporty one’.
“For me, it’s hugely important to see her carry on with the activities she loves and also to ensure she has a positive body image.
“She isn’t as active at the moment due to back pain and that’s sad to see — you expect it in your middle age but not in someone so young.
“She will get better and it’s not the end of the world but she has a long way to go.”
Family and friends have been helping to raise money for the operation and so far have made about £15,000.
They include Mrs Astles-Jones’s friend Jodie Brinson, 42, of Gatehampton Road, Goring, who raised thousands of pounds by completing the Race to the Stones ultra-marathon last month.
The two-day challenge involves running 100km along the Ridgeway footpath from Lewknor to Avebury in Wiltshire.
Mrs Brinson, who is a keen marathon runner and organises Hairy Legs, had already signed up to take part when she decided to support Orla and her family.
She has known them since 2010, when she moved to Goring with her husband Richard and children George, now 16, and Harry, 12. The two women became friends through their children attending the village pre-school and primary school.
Mrs Brinson said: “An ultra-marathon had always been on my ‘to do’ list and I’d heard a lot of good things about this event so I signed up.
“Nicola would never have asked for the money and had to consider my offer carefully because no one wants to think of themselves as a charitable cause.
“However, she spoke to a few friends and to Orla and decided it was a good idea.”
On the day of the challenge, Orla’s family were among scores of residents who cheered her on as the competitors passed through South Stoke and Goring.
Mrs Brinson completed the challenge despite being sick during the run.
She said: “There was no way I wasn’t finishing, although it was incredibly difficult to keep going.
“I was utterly exhausted when I finished but delighted because Orla is such a lovely girl and I’m so pleased to have been able to help.
“When the family came out to cheer me on, she was in tears and that made me cry as well. You wouldn’t wish their situation on anyone.” Mrs Brinson’s efforts have inspired others to embark on similar challenges to raise money.
Orla’s father Olly, who lives in Birmingham, is to take part in a running, cycling and kayaking challenge in the Outer Hebrides later this year while another family friend is going to cycle up six peaks in the Alps.
There will also be a non-uniform day at Langtree next month.
Mrs Astles-Jones said: “I wouldn’t have got even half way towards my total without Jodie starting it off but everyone has been so supportive since then. It’s all taken off so quickly.
“We’ve had so much support and I’m hoping we will be able to pay the lion’s share of the cost as a result.
“This has been a long journey but we’re nearing the end and I’m looking forward to getting back to normal, if I can even remember what ‘normal’ feels like.”
Any surplus money will go to a scoliosis charity. To make a donation, visit https://www.gofundme.
02 September 2019
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