Jon is 30 years old and has Duchenne Muscular Dystrophy.  He is from the UK and lives in the family home in Worthing, West Sussex, supported by a team of carers who provide his personal care.  Jon has very little mobility throughout his body, requires non-invasive ventilation at night and increasingly during the day and can eat only soft or puréed foods.

Despite his complex care needs, he works part-time at a local disability organisation and is an active campaigner for the rights of disabled people.  He also enjoys a good glass of wine or two with friends down the pub, and enjoys cinema, theatre and comedy shows.

Between 1999-2007 Jon lived independently at the University of Essex in Colchester.  Over a period of eight years, he gained a Bachelor’s Degree in Politics and International Relations, a Masters degree in Environmental Studies and finally a Ph.D. in Government. His early university years were fairly typical of most students, characterised by clubbing, drinking, practical jokes and the odd bit of studying.

What Jon says about the film:

“As I reach my 30th year, my deteriorating health makes me realise that there are more years behind me than ahead.  But I’m not dead yet, and I’m determined to document just what can be achieved by people living with Duchenne Muscular Dystrophy.  There are so many remarkable, spirited Duchenners out there who have so much to offer and can inspire a younger generation… it’s time that story was told.”