My name is Oriana and I need your help. I’m 19 years old and have severe scoliosis, meaning my spine is an ‘S’ shape. I have two 60° curves in my spine and need surgery to correct them so that I can get back to my life. To correct this I am going to have ASC surgery (explained below) as it is the least invasive option for me. Unfortunately, ASC isn’t currently available in the UK (where I live) and won't be until it is too late for me. Therefore, I am going to Germany in early September to have this surgery done. This is where you can help me. Because the implants are specifically designed for scoliosis they are expensive, making the surgery cost €47,000. I need to raise as much money as I can before my surgery. Below I've written a bit about the impact my condition has on my life and some information about both ASC surgery and the alternative surgery which I am anxious to avoid.

 
WHAT YOU CAN DO

1) Donate any amount you can through this GoFundMe page. All donations will be greatly appreciated by me and my parents.

2) Share this link on any and all social media you can. The more people see this page, the closer I get to my goal.

3) Encourage friends and family to check out my GoFundMe page.

Me and Olive (my guardian angel)  

DEFINITION OF SCOLIOSIS

Scoliosis is a sideways curving and rotation of the spine. It usually forms either a C or S shape. It is a potentially crippling condition which causes the upper body to look asymmetrical and often comes with chronic pain.


IMPACT ON MY LIFE

Over the last 12 years my scoliosis has impacted my life enormously. Until recently the biggest impact has always been our move from New Zealand to England and living in a brace for 8 years. However, more recently, my back has deteriorated and is now impacting my daily life in ways I never expected.

I am now in a lot of pain which I take heavy painkillers for daily and which stops me doing a lot of activities that I love. I have always been a very active person but I am no longer able to do the sports and exercise that I have always enjoyed. On a good day I can only play my flute for 10 minutes, on a bad day I can't play at all. I have to rest frequently as my back tires very quickly. One of the biggest impacts, and the one that I have kept most private about, is my mental health. My scoliosis has impacted my mental health for many years now, but more recently as my back has been worsening I've been struggling with severe depression and anxiety. This isn’t helped by the fact that I can no longer do many of the activities that used to help me to cope.

Until just a few weeks ago I was studying for my degree at the European School of Osteopathy to become an osteopath. However, due to a combination of pain, mental health and my ability to keep up with the demanding course while in this state, I have had to leave university. It broke my heart when I realised I would have to leave, but I am hoping that after my surgery I will be able to return to university to complete my degree and follow the career that I am passionate about.  

Photo: 5 of my 7 braces. 

SURGERY

Traditional scoliosis surgery is to straighten the spine and fuse it in a fixed position. To do this, back muscles are stripped from the spine; the relevant intervertebral discs are removed and replaced by pieces of metal; bone grafts are placed to promote the spine fusing and the spine is straightened by force; metal rods are inserted on either side of the spine to keep it straight and screws are inserted to keep them in place. Over the next few months the spine fuses and heals rigidly in the position the metal rods hold it in.

My aim since I was 7 has always been to avoid this. Enter Anterior Scoliosis Correction (formerly known as Vertebral Body Tethering/VBT). It is a pioneering surgery and the only non-fusion scoliosis surgery available for adults. In this operation screws are put sideways through the relevant vertebrae and a flexible cord is attached to the screws along the outside of the curve. The cord is then tightened to straighten the spine.

Because of the flexibility in the spine that is required, we knew it was a long shot that I would be a candidate for ASC, but after my 12 year fight against fusion surgery I wasn’t ready to give up without exhausting all potentials. In just a couple of years time my spine will no longer have the flexibility for ASC to be performed. This is why I need this operation as soon as possible, before fusion becomes my only option.

 
If you would like to read more about my journey up to this point, my motives to avoid fusion surgery and the benefits ASC surgery will have on me please see my blog. 

You can also follow me on Instagram. 

Thank you so much for all donations and shares!! xx