For a very long time, young Herefordshire filmmaker Ashleigh Harley kept the fact that she lives with a rare incurable condition hidden.

Ashleigh lives with Ehlers-Danlos Syndrome (EDS), an invisible disability that she must survive on a liquid diet and on bad days is confined to wheelchair. Her diagnosis at 12 led to home schooling and the discovery of a passion for filmmaking.

Having already won awards for her film, The Wall of Lyon – it is now elegible for entry to the BAFTA Cymru awards – Ashleigh is now making a documentary, The Dark Horse, that combines film with her other love, horse riding.

With the help of her local RDA group, Ashleigh has discovered that she once again pursue her love of showjumping, and she is determined as her film documents, to see para showjumping recognised as a Paralympic sport.

She has been joined in the project by the Oscar-winning team behind The Silent Child, and her determination to see showjumping at the Paraylympic Games, has had support from the Tim Stockdale Foundation, interviewed Craig Spence, one of the heads of the Paralympics International Committee, visited British Showjumping's HQ and jumped on the legendary 'Kalico Bay' who won the King George V Grand Pix.

While filming is paused during lockdown, and recently Ashleigh also experienced a flare up of her condition, which caused a 50 per cent reduction in her lung capacity.

The family were, however, determined to manage at home (they would rather not say where they live after suffering problems about privacy), knowing that she would be admitted to the Covid-19 ward if taken to hospital.

Despite immense challenge and struggling to breathe whilst aided by an oxygen concentrator, Ashleigh wrote a song, Worlds Apart, which has struck a chord with people around the globe.

After receiving many messages from people asking if they could sing the song with her, an online performance has been organised for June 7, when the event will be filmed. Visit ashleighharley.com/worlds-apart.