Donation, donation, donation!

Lot’s has happened since Germany; we’ve set up a GoFundMe account and, thanks to the generous donations that we’ve received from friends and family, we raised £4000 in the first week! Since then the word has spread and we’re now close to £7000 which is putting us well on our way towards our goal.

Last week I was in the local newspaper: The Herts and Essex Observer. It was so much fun! A lovely lady came round and interviewed me. She recorded me while she did it which was a little bit nerve-wracking as I was worried that I might mess it up. Then, a photographer called Alison came and took some photos of us. She told us to look serious, so I did, but I ended up taking it a bit too literally and looking really grumpy in the pictures. It was a really cool experience and people started to recognise me from it – I feel like a celebrity!

People are appearing from left, right and centre with ideas for events. We’ve been offered venues, catering and even a DJ. The local Minister is arranging a big football match for me. Even my twelve year old sister, Holi, has joined in by making and selling pots of ‘slime’ (not really my thing, but it’s a huge trend at the moment so she’s getting a lot of customers!) 

Next Friday we’re going to run a bake sale at school. We’ve been lucky enough to receive an amazing platter of cakes from the local bakery, Dorringtons, and lots have people have been talking about making cakes. Me and my sister can’t wait to get baking and I can tell that it’s going to be a little bit manic the night before – it’s getting really exciting!

It warms my heart to see everyone helping out and doing what they can to raise money. I didn’t expect so many people to be so eager to join in, and it is honestly the loveliest thing I’ve ever known. I’m so lucky to have so much love around me. At the moment it’s helping me to put thoughts of surgery to one side and concentrate on the positive things in life.

VBT - Could it be for me?

After a lot of research and stress, mum stumbled across an online forum in which people were talking about a procedure called ‘Vertebral Body Tethering’ (VBT) and how amazing its results had been for them. We looked it up and it was as if all of our worries evaporated. 

VBT is a scoliosis-correcting surgery, where, instead of rigid metal bars, a flexible cord is inserted into the back and straightens it without limiting flexibility. Originally, this surgery was only performed on growing spines that would straighten over time, but now can be performed on mature spines thanks to new techniques. It is only a two hour procedure compared to the six hours of fusion, has a far shorter and less painful recovery and will leave me with minimal scarring. Perfect!

There is only one issue. The NHS doesn’t perform this surgery at the moment. After, what were very successful trials of the procedure by our consultant at Stanmore and other surgeons, backing was withdrawn here in the U.K. because of administrative issues. This means that to get it done we will have to go to Germany, where it will cost us €35,000. 

We went to visit Dr Trobisch in December 2017. My alarm was set for 04:30  (ouch!) and after taking a taxi, a plane, a train and another taxi we arrived at the clinic early that afternoon. It was a really long day and by the end of it I was exhausted. Dr T was great though! He looked at my x-rays and told us that I am definitely a candidate for this surgery and the size of my curve meant that I will have to get some kind of surgery, whether that means fusion or VBT. 

I knew what I wanted. VBT offers me everything that normal people have, and that’s all I want. So just before new year we booked my surgery for the 8^th of August, all that we have to do is find the money, and so we have started a fundraising campaign...

How I found out

Hi. My name is Alis, I’m 15 years old and I have scoliosis. Scoliosis is an abnormal curvature of the spine which can develop during adolescence. If the curve gets too large, it can have pretty intense effects as it can start to crush internal organs and cause breathing problems. At the moment it causes me pain after doing sports or carrying my 100lb bag around school every day. This is a big journey for me and I’m going to use this blog as a way to share my experience and raise awareness, as well as to make sense of it for myself. My first couple of uploads are going to be filling you in on my story so far and then I’ll give weekly updates as time goes on. So here we go!

Picture the scene: it’s summer 2016, you’re walking around at a music festival when your mum notices that your top is hanging unevenly, one side touching your trousers and one half exposing your waist. She tries to straighten it up for you, but it won’t stay in place. It was only then when she realises that there’s something wrong – your spine isn’t straight.

This is what happened to me. We had heard about scoliosis before so we were quick to connect the dots and realise what was going on. We rushed down to my GP who referred me to my local hospital. Here, a doctor referred me to the Royal National Orthopaedic Hospital in Stanmore where we saw a consultant.  Even though it took nearly a year, it was all very overwhelming and felt like a huge rush. Over this time we were hit with a lot of information but there were two main points.

-    - I have a 50’ curve which is classed as significant and therefore most surgeons would recommend surgery.

-    - The NHS does a procedure called Fusion – an irreversible, 6 hour process in which the cartilage is removed between the vertebrates and what is essentially scaffolding is put up your spine. The individual bones are fused together to become a single, unbendable bone. This will completely remove all flexibility in my back for the rest of my life and leaves me wondering: will I ever be able to dance, ride rollercoasters, jump on trampolines or even tie my shoes laces? This is not ideal.

This left us with a lot to think about and my mum started to research it, trying to work out if Fusion is the best option we have or if there is another way to tackle it. And luckily, there is...