Hello. A short story about my grandson, Ethan.

He is 7 years old. He is funny, cheeky and never makes a fuss. He laughs and is a very happy little chap. However, he is not a well fella as he suffers from a variety of life threatening problems which will, unfortunately bring his life to an abrupt end. There are no easy ways to explain the conditions he suffers from as they numerous and complicated so I have some of his ailments listed here.

Mitochonial disease

Epilepsy

Hyper Mobility

Global Delay

Hearing loss

Liver and Kidney problems.

All of these illnesses are affecting Ethan and slowly undermining his health.

It’s terrible to know he will one day not be with us so in the meantime we try to make his life as comfortable and interesting as we can. This is where Demelza will make a huge difference to him and his family.

Demelza delivers extraordinary care to extraordinary children who are facing serious or life-limiting conditions, throughout Kent, South East London and East Sussex. We’re here for them and their families with expert clinical, emotional and practical support at every step – from first diagnosis and for as long as we’re needed.

I will be walking 25 km in October to raise some money for Demelza and try to help the organisation with ongoing care and support.