Thank you for taking the time to read about me.
My name is Emiah and I am 14 yrs old.
I used to love swimming and athletics. Its through the training in a swimming squad we discovered I had scoliosis- a curve in my spine. Everytime I trained my shoulder really hurt. My mother took me to see a physio and it didnt take them long to see that my shoulders weren't in alignment and neither were my hips. I was also having problems with breathing and my chest feeling tight because my spine was also twisting and crushing my internal organs. They referred me to a consultant who told me I needed an operation to correct the curve and the sooner the better. I was going to have rods inserted either side of my spine to keep me straight, my vertebrae would then be fused together and my spine would become rigid. Unfortunately my curve is also low down so the rods would be in the worst place to have them , affecting my movement and flexibilty even further .
We were all very scared and upset at the thought of how the rods would affect my future and quality of life.
Then my mother, by chance saw a story about another young girl who was going to America for a life changing operation for scoliosis called VBT .
VBT (Vertebral Body Tethering )
VBT has been pioneered in the US. The life changing procure corrects the curve without the need to fuse the spine. Screws are placed into the bones on the outer aspect of the curve and a polymer cable is passed through the screws. As the child grows the cord tensions and pulls the spine in line , straightening it in the process.
Unfortunately the funding for VBT has been stopped in the uk for now, by the time it returns it will be too late for me .
What Happened Next
We went to America in April this year to see surgeons at a charity funded hospital , they fund the operations for children from all around the world as the operation costs £160,000 . Unfortunately I didnt meet their criteria as they only operate if you have growth left.
We thought that was that and I was so disappointed but really grateful to my parents for trying so hard to get me sorted. I resigned myself to having the rods when I returned as we didnt have £160,000 to fund it privately in America. Time was running out for the operation to be viable for me.
Next thing we were on a plane to Germany !!
My mother said we'd go around the word in 80 days until we found someone who could help , LOL .
By a miracle a German surgeon who had been working as one of the top surgeons performing VBT in America was returning to live in Germany and was going to be doing VBT there .
To our astonishment he said YES !!
The surgeon is going to try a more advanced procedure again . As I haven't got much growth left he will tension and tighten the cord during the operation pulling my spine into alignment, correcting the curve in my spine to make me straight whilst I am on the operating table - how clever is that !!
I will keep my flexibility I won't be restricted in my movements and should be able to lead a pain free normal life. Recovery is a lot quicker as it is a lot less invasive procedure than having rods and fusion .
He said if we'd seen him a year ago he wouldn't have considered correcting me during the surgery, but medicine has advanced so quickly and equiptment has been updated he said he was very confident he could get a good outcome for me.
Im so lucky and happy to have this opportunity to be painfree and straight.
I am having the operation in Germany on August the 16th this year.
Im so excited I cant wait to be straightned and even maybe a little taller !! ( Hopefully past my dad ; ) )
My parents and paternal grandparents are self funding this mostly themselves , however the costs are mounting up and are more than originally anticipated There is the operation itself ( which thankfully in Germany is a fraction of the cost) , insurance, consultation fees , rehab and aftercare - plus follow ups in Germany for a while. Probably the whole cost will be at least £30, 000 probably a lot more .
Its a lot of money to find in a short space of time , everything happened so quickly and now the realisation that August the 16th is just over a month away !!
We were unsure about funding , however so many people have said they would like to help as they want to see that I have this operation.
We have being asked to organise a platform to enable people to donate and organise fundraising if they wanted to .
I'm so blessed to have such wonderful support around me and have been overwhelmed at how many people have showed their love and support . We are lucky as a family to have such fantastic family and friends near and far. I also hope it spreads the word about scoliosis as it is more common than people realise , the sooner its picked up the better .
Thank You so much
Emiah , Jacob, Simon ( George ) and Menna