Choosing to have surgery in an attempt to control my epilepsy was a scary decision my family had to make, but little did we know how life changing it would be. Thanks to ground-breaking research, 11 years later I am still seizure-free and living a life free from epilepsy.

I was only seven years old at the time, so I don’t recall things too clearly – everything is rather fuzzy pre-surgery. I started off at a local NHS hospital, but my epilepsy was so severe that I was referred to Professor Helen Cross OBE, the leading epilepsy consultant at Great Ormond Street Hospital (GOSH). I had lots of tests every few weeks, if not days, and GOSH is where I met the most incredible staff and doctors.

On the day of the surgery, I remember feeling very tired and lethargic as I was still having seizures in my sleep during the night. Because I had very little idea as to what was going on, I was feeling very scared, so I clung to my parents as much as possible. That is the last moment I can recall – the rest is a blur.

A piece of brain tissue the size of a 20 pence piece was removed during my surgery, and that was the moment my life changed. I recall waking up with the most painful headache I had ever experienced, whilst having a huge bandage wrapped around my head. I had roughly 50 electrodes fixed onto a silicone rubber skin that was connected to fibre optics, which was then connected to a computer monitoring my brain activity 24/7. I was like this for the next 3 weeks.

Just 24 hours after the surgery, the doctors and my family had already noticed a significant transformation and said I was like a different child. I was eating, playing, talking and eager to learn and see people. Post-surgery, I had to re-learn basic skills as well as literacy and numeracy, after 6 years of interrupted education.

Looking back, as a 19-year-old, it is truly astonishing how technology, medicines and research have progressed in that time, and it’s only going to get better from here. Along with the care I received in GOSH and the skills of the surgeons, I know that it was research that saved me. I am so grateful for the life that research and surgery have given me, and to be celebrating 11 years seizure-free. 

Thank you

Rachel

Epilepsy interrupts the lives of ordinary, extraordinary people, just like Rachel. It’s invisible, it’s unpredictable, it’s frightening.

A life free from epilepsy is possible. But only through research.

Thank you for your continued support.