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18 months later and I’m seizure free

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After brain surgery successfully treated her epilepsy, Sophie is enjoying ‘amazing independence’ and looking forward to exploring South America and Asia before university.         

 

                         

                                          Sophie today: fully independent and working as an usher whilst taking her A levels

 

It would be a huge understatement to say that my life has changed completely in the last 18 months. My name is Sophie Lennox and I had brain surgery in October 2015 to treat my epilepsy.

I was a totally normal child, someone who loved sport and was incredibly active. Aged 11, on a Thursday morning, I began my weekly run only to have what I now know was a seizure. I remember feeling as if I was transfixed, staring at a tree, with no capability to turn away from it. As the weeks went by, the seizures grew ever more frequent. The playground became a battleground and everyday ball games, which I once loved, filled me with sheer fear. As I moved to secondary school, epilepsy began to affect my learning and very soon I was bottom of the class, having seizures four times a day. For a child approaching her teenage years, I was baffled at the idea of living my life with this condition.

As the months went by, I began to rely heavily on medication and ended up on a dose recommended to obese males. Despite this, my seizures were only suppressed to three or four a day, a miracle when comparing this to the 10 to 20 I could have without medication, but still far from perfect. I fell down stairs, including on buses, in front of moving traffic and by the edge of train platforms.

 

                               

                                            After her epilepsy developed, Sophie endured many hospital stays, distressing tests
                                      ​and, eventually, brain surgery after which, thankfully, she became completely seizure free

 

Finding out the cause of my epilepsy took a tedious three years and after three brain scans, it was discovered that I had a cortical dysplasia, essentially a birthmark in my brain, which occasionally can manifest into epilepsy. Surgery was eventually mentioned to me in passing and, along with my family, I jumped at the idea – one which provided me with an undeniable amount of hope. As I got older, the things that I could and couldn’t do became clearer and surgery became my goal.

In 2015, I met three different surgeons and we decided on a trial of deep brain stimulation (DBS). It reduced my chance of paralysis because the team at Kings College London believed that paralysis was simply not an option for a 15 year old and, despite the fact that it involved two surgeries, one where I was awake, it was overwhelmingly worth it. DBS allowed my surgeon to pin point exactly where both my epilepsy and my motor functions were placed. It is a relatively new procedure, with only five people currently having undergone it.

Thanks to this, on 3 October 3 2015 I became epilepsy free and, a year later, medication free.

The treatment changed my life and this is all thanks to the funding of Action Medical Research and the incredible team I had supporting me at Kings. I am someone who is incredibly lucky to have had the support team I did; I went into surgery surrounded by an inspiring family, who were exceedingly strong, and some amazing friends.

18 months on and I am completely healthy and living the normal life I once had. The independence I now have is amazing and I feel so much safer in general. Simple things that I would’ve once worried about doing no longer cross my mind and I have a job as an usher, something I would never have dreamed of contemplating.

Both mentally and physically I feel so much more capable and I am currently studying politics, psychology and English at A-level. After year 13 I plan on taking a gap year and travelling to South America and Asia before taking politics and international relations at university.  All of these plans are something I would’ve thought long and hard about before.

 

                        

                                               Family matters: Sophie with dad Andrew, mum Anne and little brother Rory

 

  • National Epilepsy week is 15-21 May 2017
  • You can read more about the techniques that researchers are refining, with funding from Action Medical Research and Great Ormond Street Hospital Children's Charity, here.