My son Ollie is 10, has the most amazing smile and a cheeky  personality. He also has an ultra-rare condition called Alternating Hemiplegia of Childhood which is a mouthful so we call it AHC. Its effects less than 1 in a million.

Most people, including Doctors, have never heard of it. It causes weakness in any muscle, so arms and legs but also those that control the heart, breathing, swallowing, bladder you name and it can be affected. The weakness can happen at any time and last for anything from minutes to hours to days and sometimes it never gets better.

He did learn to walk, eat and talk but AHC has robbed him of that so that he now is reliant on a wheelchair and feeding tube and believes breathing is an optional activity. On a good day he can get himself around on his knees but on a bad day he can’t even lift his own head. 

But he loves life so much and loves coming for a run with my wife and I. He is the best cheerleader and will clap any runner, cyclist or indeed anyone walking that he sees. I started running to raise money for this super rare condition with a 5k and now I’m running this half marathon. 

And if you ever see us running make sure you give him a smile or even a wave.

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