Olivia's Life Changing Surgery

Olivia’s story – fundraising for urgent spinal surgery

https://www.facebook.com/spinalsurgeryforolivia/  #spinalsurgeryforolivia

Our wonderful 14 year old daughter Olivia needs pioneering spinal surgery which is not currently available on the NHS. Can you help us raise enough money to take her to a specialist surgeon in Germany?

Olivia suffers from severe scoliosis – a deformity of the spine which has left her misshapen - and in a great deal of pain. Olivia is a warm and engaging teenager; arty and musical with lots of friends at school, plus a 10 year old brother, Alex. She loves to draw, sing and play the ukulele, and before her scoliosis caused her so much pain, she was a keen mountain biker and loved trampolining.

Our diagnosis

We first noticed a hump in Olivia’s back just before Christmas 2016 and our doctor referred Olivia to see a consultant who gave us the devastating news that Olivia has adolescent idiopathic scoliosis, a condition that occurs during puberty for no known reason.  For us, we had never even heard of scoliosis and this was a huge shock.  No, there was no cure and no, physiotherapy would not help.  X-rays revealed that she had a 65 degree curve in her upper spine (thoracic) and a 43 degree curve in her lower spine (lumbar), which means her spine is S shaped when viewed from behind. Olivia was given a thick plastic brace to wear for 23 hours a day to slow down the curvature, but ultimately major spinal surgery involving the fusion of her vertebrae to a 30cm titanium rod was given as the only option to prevent ongoing deterioration and eventual disability.


Our journey has not been straightforward. Whilst we are supporters of the NHS, over the last 14 months we have endured visits to four different hospitals and attended a series of appointments with five different consultants and surgeons. Conflicting advice about treatment and surgery, poor administration and delays have held up the urgent treatment and it’s been hugely stressful, not just for us as parents, but our lovely daughter too. Her worry about the surgery, the risk of damage to her internal organs and paralysis has had its impact, transforming our bubbly teenager into one that is withdrawn and quiet as she contemplates what lies ahead of her.

Pioneering spinal surgery – what VBT is and how will it work for Olivia

We were given new hope last August when we read a newspaper article about a local family who had taken their child to Germany for a new kind of scoliosis surgery that was less invasive and which would leave Olivia with full spinal flexibility. Not only would she still be able to bend down and tie her own shoe laces but her recovery time would be shortened from 6 months to 6 weeks. As we continued our research through the support of some brilliant Facebook groups and their amazing members we realised that Vertebral Body Tethering (VBT) would offer Olivia a better quality of life after surgery, and that this is what we wanted for our daughter.

We had to move quickly. VBT’s success is time-dependant; it uses titanium pins in the outer curvature of the spine with a cord running between them and this tightens with growth to straighten the curve. The difficulty for us is that VBT surgery is not available on the NHS as the National Institute for Health and Care Excellence (NICE) is unable to advocate it because there are not five years of continuous studies. It’s also viewed as too expensive. However, all of the surgeons that we have consulted believe that this is the future of scoliosis surgery and each of them has said that they would choose VBT for their own child.

We made the trip to see the surgeon, Dr Trobisch, in Simmerath, Germany and the expert consultation we received at that visit was first class.

Convinced, we have made a provisional booking for the VBT op, 14th March.  The cost is €35,000 {€47,000 if a double tether is needed} and with your help we can achieve this.

We have regrets every day that we did not notice Olivia’s condition sooner, when surgery might have been preventable.  Unfortunately, simple checks in schools are no longer done and with body-conscious teenagers this is all-too common.  However, we are confident that we are choosing the right way forward.

At the time of writing this, VBT is to be made available in the UK - privately in an NHS hospital - as a precursor to it being reviewed by NICE, but it is still much more expensive than in Germany.  Sadly this is too late and too expensive for us.

Here’s what our daughter Olivia has to say:


I started noticing the pain in the summer of 2016 and my parents realised that one side of my back was higher than the other. It is a quite a deep constant pain throughout my body and it is hard to stand for long periods. When I got the brace last May, it was a weird thing and it felt very primitive. It’s like a plastic corset, thick, restrictive and unwieldy. I felt quite self-conscious about wearing it but managed to cover it up with baggy T-shirts. At least wearing it is a positive thing, despite how awful it is, because I feel like I’m doing something to support my spine. I feel pretty helpless about my situation otherwise. I have to wear it all day every day and I only take it off for sports and showering. I’ve kind of got used to it now. I get a lot headaches too which I think are probably related; certainly other people who suffer with scoliosis have a lot of headaches too.

I am worried about the surgery, particularly when I think that they will be digging around inside me. I don’t know what to expect as I’ve never been through anything like this before. I think I may freak out and just want to go home. I do feel scared, especially when I see how stressed my parents are about it. We have just met a family with a teenage girl who has had successful VBT surgery and that was very reassuring. I know that I need to build up my core strength with exercise like Pilates, yoga and sit-ups before the surgery and also to maintain my upper body strength afterwards. It’s quite a responsibility to keep my back strong after the surgery, especially as it’s so expensive. That scares me too – it’s going to be a lifelong issue. We’re booked in for surgery on 14 March and we will miss my brother Alex’s 11th birthday – he says he’s cool about it but that’s sad, too. I now realise how lucky I am to have the life I have and family to support me.

I would like to start a national campaign to get all primary schools to carry out spinal checks. This would be so easy to do and only take a few minutes as part of a fun lesson for kids, checking each other’s vertebrae and curvature and so on. Then hopefully any problems like mine would be spotted and corrected earlier, so that other children wouldn’t have to go through what I’m going through now.

Thank you so much

Our next step

Our heartfelt thanks to you for reading our story and for any donation you can make to help. Olivia needs this ground-breaking spinal surgery before it’s too late, so that she can go on to live the life that any girl deserves.

 All money raised will be put towards the cost of Olivia’s life changing surgery and the associated costs. In the event that we raise more money than is required we will donate to charities associated with Olivia’s condition. If the option for VBT becomes unavailable to Olivia all donations will be refunded.

Once again, thank you and please share our story with your friends and on social media. We are very grateful, and with any donation, no matter how small you will help us to reach our goal for Olivia.

Estelle, Kieran, Olivia and Alex

Find out more about scoliosis , and methods of correction  including VBT

Donations

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  • anthony johnston 
    • £20 
    • 26 mos
  • St Paul's CofE Primary School 
    • £306 (Offline)
    • 33 mos
  • Ulli Drewett 
    • £20 
    • 35 mos
  • Anonymous 
    • £10 
    • 35 mos
  • Shelley Holland 
    • £350 (Offline)
    • 36 mos
See all

Organizer

Olivia Flynn 
Organizer
Kingston Upon Thames, Greater London, United Kingdom
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