Rob was diagnosed with epilepsy in early 2015 after having had two seizures. At that time he was in his second year, studying at De Montfort University, Leicester, for a degree in Computer Science.From the outset Rob refused to let his epilepsy rule his life and he continued to live his life to the full both at university and at home. During his time at university he worked a year out in industry at a local IT firm in Leicester and started doing lectures for his local PHP community where he made a great many friends.

From the time he was diagnosed with epilepsy he and I (his mum) were aware of SUDEP as his Consultant had mentioned it to him and we made sure we knew what this meant. We didn’t worry about it though and we put it to the back of our minds – after it all it was never going to happen and his epilepsy seemed well controlled…

On Saturday 7th January 2017 we were due to take Rob back to university to finish his final year of his degree and we were all making plans for his graduation in July. Unfortunately we never did take him back to university as late on that morning Rob died – the cause of his death being confirmed as SUDEP. He was only 22 years old.

Since that time we, as his family and friends, have been slowly trying to piece our lives back together, all the time knowing that Rob will never be a physical part of those lives again. At his funeral many tributes were paid to him, and two of his best friends, Jonathan and Charlie, described him as funny, kind, a true gentleman and loved by all of his friends – I can’t think of a better tribute to him.

Losing Rob has left a huge hole in the lives of all of us and we therefore wanted to set up this memorial fund in order to allow the further progress of epilepsy research in the hope that at some point in the future no other families will need to go through this. Epilepsy research is incredibly under funded and has little media attention and we hope that in raising funds we can start to change that a little at a time.

– Rachel, Graham and family (including Rob’s second family!), April 2017

To make a donation to Rob’s memorial fund, please use the link below.