My son Arlo was diagnosed as having Dravet's Syndrome in March. As many of you know, Arlo has suffered from regular, often life-threating seizures since he was only 10 weeks old. He has cumulatively spent many months in hospital after innumerable seizures, some of which lasted for hours and took weeks to recover from. He has spent time in intensive care units, been rushed to hospital in an ambulance about once a week for the first three years of his life, and had more drugs than I've had hot dinners (a not insubstantial number). Despite all of this, he always comes round from even large seizures with a smile on his face.

Despite the support of our close friends and family, for the first couple of years we were lost as Arlo seemed to ebb further and further from being a 'normal' child. Receiving the diagnosis allowed us to make contact with the Dravet Syndrome UK support group where we found a community of families whose experiences and difficulties were similar to our own. Their work provides hope for the future in terms of promoting awareness and research into the causes and treatment of Dravet's, and help with the everyday difficulties of supporting a Dravet's child. For all these reasons we think it's very important to support their precious work.

Having said that, I'm not sure it's important enough to subject my poor limbs to 13 miles and change of running, but heigh-ho, I guess Arlo's been through worse.