On April 26th I will be running the London Marathon. With an already jam-packed life (three children, work and all the bits in between) finding the time to train is quite a mission, however I find running a real joy. A marathon is a considerable jump up for me but here's why I am motivated and inspired to take it on... 

Around 60,000 children in the UK have epilepsy, and up to a third of the children continue to suffer with debilitating seizures despite medication, and sometimes even brain surgery. This is one of the vital areas of Research that Action Medical Research for Children undertakes, and one which is especially important to me.

One of my oldest childhood friends has a beautiful four year old son called Eddie. Eddie has a rare genetic mutation linked to small blood vessel disease which caused a (or some) bleeds on his brain in utero, leaving him with a severe brain injury. Consequently Eddie has various neurological conditions, including cortical vision impairment (he is registered as functionally blind), Grade 4 Cerebral Palsy affecting all four limbs, intractable epilepsy (West syndrome) and global developmental delay. West syndrome, also known as infantile spasms, is a rare and severe epilepsy syndrome and it has had a truly devastating impact on his development. At the age of four Eddie is just learning to sit up, but cannot stand, walk, nor talk. He is globally delayed in every area. Without doubt the ongoing seizures Eddie has are his biggest challenge, and barrier to leading a more independent, and healthy life.

Eddie has tried numerous epilepsy medications, has been involved in a medical trial for the ketogenic diet under Great Ormond Street Hospital, and has also been assessed for brain surgery. Nothing has given Eddie seizure freedom. His family have been actively campaigning for Eddie to access Medicinal Cannabis, and would welcome more research into this area, along with any other treatments which might help their little boy live an easier, healthier and happier life.

Despite Eddie’s numerous challenges he’s a cheeky little boy, with a smile that lights up the room. But children like Eddie and their families need hope, hope that one day research will provide both knowledge and a treatment to help improve their quality of life. Action Medical Research has been funding medical breakthroughs to help save and change the lives of babies and children just like Eddie.