Orlas new spine

Orla… gymnast, dancer, brilliant runner and my best friend, was diagnosed with idiopathic thoracic scoliosis and kyphosis in September 2018. She was 11 years old. She’s still my best friend but the active part of her life has fallen by the wayside. Although she hides it well, Orla is in constant pain as the curve in her spine constricts her internal organs and puts pressure on her nerves. At 139cm and 29 kilos she’s not even started to develop. Other measurements get complicated, but indicators predict that Orla’s spine will continue to grow rapidly in the wrong direction and she’s a long way off physical maturity. This will only get worse. She needs a surgical fix. The NHS, of which I am so proud, can offer fusion. This involves making 13 of the moveable vertebrae in her back one block of bone. That will stop the spine growing in the wrong direction, but it will also mean that Orla will never go back to gymnastics and growth in her torso will be dramatically restricted, while the rest of her body continues to grow normally. This is a huge problem given Orla’s measurements.

Scoliosis hit the press in a big way last year with the reveal of Princess Eugenie's fusion scar on her big day. So if fusion is good enough for a princess, then why isn’t it good enough for Orla? Well, the big difference is clever developmental indicators around bone growth and physical maturity. These are called Risser and Sanders. Orla measures just 0 of 5 on the Risser, and 4 of 8 on the Sanders scale. This has made her a grey area as a candidate for fusion as she has so far to go in terms of bone development. But fusion is all that’s on offer in this country unless I have a six-digit budget for private treatment.

It’s been a long and complicated journey just to get this far, but the truth is that Orla’s a very lucky girl. She has been accepted by Shriners International Children’s hospital in Philadelphia, a specialist hospital for children with severe physical deformities. Shriners want her for their Vertebral Body Tethering (VBT) Programme because she fulfils every criterion to make her the perfect fit for this pioneering treatment, which is offered only to a handful of children around the world. VBT, in its simplest form, is an internal back brace that supports spinal growth and correction during rapid growth spurts, preserving motion. VBT is major surgery, involving the deflation of a lung and potential removal of ribs, but the prospects for a girl like Orla are amazing. She has the support of a fantastic team at the Nuffield Orthopaedic Hospital in Oxford and Dr Bernard, of the Wimbledon Clinic a leading luminary on VBT. I hope that one day this surgery will be widely available for children like Orla in this country, but for now the only option is to take her to Philadelphia.

I need to get Orla to Shriners quickly before she gets worse. She is at the top end of their criterion and needs to go now. This will mean decamping to Philadelphia for four to six weeks and committing to future visits to report back on progress. This is not something I can afford to do on my own nor something I take lightly, and that’s why I am reaching out to you. My wish is for Orla to get back to her active life and for learning to come out of this that will benefit other children like her in the future.

I have no idea of the final bill right now, but it’s likely to be at least £15,000. This accounts for 3 return trips to Shiners; pre-operative assessment (3-4 days), the actual operation (4 to 6 weeks) and at least one post-operative assessment later in the year (3-4 days). This is the minimum commitment that we must make to Shriners. The NHS will not be able to care for Orla in this country post operatively this will have to be done via Dr Bernard at the Wimbledon clinics and I have no idea again what this bill will come to. I will have to pay for each scan, x-ray, prescription and medical appointment as I have done up until  now, as the NHS simply cannot support the needs of VBT patients. Going forward this will be impossible to manage. Whatever we raise will be put toward making Orla available to Shriners for their VBT Programme at every possible convenience.  Any residual funds will be donated to Shriners to develop their ground-breaking work to improve the life of children around the world who would otherwise face a life of pain and deformity.

Thank you.

Nicola

Orla’s Mum (and best friend)

Useful links;
https://pediatricspinefoundation.org/
https://en.wikipedia.org/wiki/Scoliosis
https://en.wikipedia.org/wiki/Risser_Sign
https://www.shrinershospitalsforchildren.org/philadelphia