Thanks for taking the time to visit my JustGiving page. You can read my full story by clicking 'Read more of my story' below.

In June 2016, I am going to walk the Coast to Coast route over 14 days and 190 miles across northern England with my Dad. We will be mostly camping along the way, with just the occasional night in B&B to get warm and dry! As well as being a personal challenge, it’s also a way of raising money for the Royal National Orthopaedic Hospital (RNOH), a place where throughout my childhood I have had much treatment and several operations to treat my scoliosis.

My Story:

I was born in 1997, 13 weeks premature, with congenital scoliosis, a severe s-shaped curvature of the spine. This was detected before I was born. The curves would inevitably progress as I grew, potentially leading to damage to my internal organs. I had to wear a plaster jacket as a toddler during an 18 month waiting-list, and in July 2001 at the age of 3 I was admitted to the RNOH Stanmore for a spinal fusion, involving the insertion of a metal plate and screws into my lower vertebrae, in order to prevent further curvature in that area. This procedure meant a stay of two weeks in hospital followed by having to wear a plaster jacket and many months of recovery.

I started primary school that September (still wearing the plaster jacket!) and had annual x-rays and check-ups for the next 8 years. Although significantly curved, the scoliosis did not cause much discomfort and I was still able to do almost everything I wanted. In December 2009, a year after starting secondary school, it was noticed that the others curve, in my upper spine, was progressing. This necessitated more surgery quickly. In order to keep the spine straight whilst growing, internal ‘growth rods’ are used in older children and teenagers; screwed to the spine at top and bottom and extended regularly as the patient grows. Mine was a new-design titanium rod still under collaborative development between my surgeon in the UK (Mr. Noordeen) and biomedical engineers in the USA. This rod eliminated the need for invasive surgery every 6 months to extend the rod, and instead used a magnet-driven motor so that the rod could be lengthened externally in seconds whilst the patient is still awake. After much consideration by me and my parents, we decided that I should be one of the first people in the world to have this ground-breaking procedure carried out. In February 2010, I underwent 4 hours of surgery at the Princess Grace Hospital in London (due to bed shortages at my usual hospital!). The procedure was carried out by Mr. Noordeen and overseen by the Californian manufacturers. After 10 days in hospital, I came home again and spent the following two months learning to move and live with the new implant. My spine had been straightened considerably during the operation, and the rod should keep it as straight as possible as I grew.

 I had the first lengthening of the rod a few months later. A hand-held magnetic control is placed over my back whilst I lie face-down on a bed, and when a button is pressed, this causes the magnet-driven motor in the rod to spin, which increases the length of the rod a millimetre at a time. Each lengthening (no more that 6mm) took around 20 seconds and didn’t feel painful or uncomfortable. The new technology meant I could go straight home again without a stay in hospital.
However, it was discovered soon after this that the early rods (the one I had in) had a design-fault: a certain type of movement could ‘unwind’ the rod, causing it to decrease in length. Because of this, I was forced to wear a very strong magnet against my back during the day. This held the magnets in the rod in place, meaning the rod could not unwind itself. Wearing a very strong magnet on your back turns out to be quite inconvenient! I often found that the magnet would fly off my back and stick to nearby magnetic objects (car doors, chairs, buses etc.) or that random metal objects could stick to me (keys, cutlery) if they got within a few centimetres. This was not only awkward for me, but also quite difficult to explain to the person behind you in a queue whose keys have just stuck to your back! (I didn’t bother to explain in the end).

In September 2011, whilst sitting, I felt a painful thump in my back as if someone had hit me from behind. I wasn’t sure what had happened, but went to school as normal the next day still in some discomfort. During a lesson, I suddenly felt a grinding in my back whenever I moved. I knew something had gone very wrong. I immediately was taken to A&E close by, and after an x-ray, it was discovered that the rod had snapped, leaving the two halves still attached but incorrectly placed. This meant the rod had to be replaced as soon as possible. The next few days were spent trying to find bed space at the RNOH, and finally, 5 days later, I had the rod replaced with a newer, fault-free version (removing the need to wear the magnet!). Again, after 4 days in hospital I came home and was soon back to normal after a month or so.

During the course of the next 3 ½ years, I had regular lengthening’s until it was agreed that I had come to the end of my growing at the age of 17 (a bit disappointing for me as I am and always will be 5ft 4in due to my scoliosis!). Reaching my full height meant the rod could come out, so in July 2015, after completing my A-Level exams, it was removed. After a couple of months, I was back to normal again and today can do almost everything I want to. There is still some scoliosis left, particularly an outward curvature that causes hunching of the spine that developed whilst the rod was in, however it is now thought that this will not progress any further and doesn’t cause many issues in day-to-day life.

I am enormously grateful to my Mum, Dad, older brother Jack and twin Ollie, for always being right there for me, including by my bed day and night in hospital (not an experience I would wish upon anyone!). I couldn’t ask for better people to go through it with. I would also like to thank the rest of my family and friends for being so supportive and helping so much when I really needed it. Also, to anyone else who has ever been involved and to Mr Noordeen and the rest of the team at the RNOH for their expertise and care. I wouldn’t be standing as straight as I am today without any of these people.

I hope this 14-day trek will raise money towards the much-needed redevelopment of the RNOH Stanmore site, specifically the New Children and Young People’s Ward.

Thank you for taking the time to read my story and for donating. It means that more young people can continue to receive world-class orthopaedic treatment just like I did for many years to come.

 https://youtu.be/HOnnfTalt-g - A clip from the One Show showing the procedure, the hospital and my surgical consultant, Mr Noordeen

http://ellipse-tech.com/wp-content/uploads/2014/06/magecproduct.pdf - A brochure for the magnetic rod and ERC

https://youtu.be/jRzFLQbPmoU?list=UUh-PuhtRht3wnOgcwB1j5mw - My surgeon in an interview about the magnetic technology