Disability campaigner Dermot shares his life story in Short Film of rare condition in short film

A GREENCASTLE disability rights campaigner is set to feature in a short film as part of the ‘Voices of the one in 17, Rare Stories Film Project’ which has been launched by The Northern Ireland Rare Disease Partnership (NIRDP).

Dermot Devlin has generously shared his story of living with a rare syndrome known known as Mucopolysaccharides Morquio (MPS Morquio), a rare metabolic condition in which the body is unable to break down long chains of sugar molecules called glycosaminoglycans.

This rare condition only affects eight people across the North.

The ‘Rare Stories’ series hopes to serve as a reminder that behind every statistic, there is a person with a unique story. These are the stories of people in the North who face extraordinary challenges with strength and grace every day.

With the intention of welcoming people to lend their ears and hearts to these narratives to advocate for change, this series of short films are on a mission to inspire the people of the North to contribute to a more inclusive and supportive society for all, especially for those with rare diseases who are often left in the shadows.

Over the past year, NIRDP has captured voices and lived experiences of people on film from across the North who have been diagnosed with rare diseases in the ‘Voices of the 1 in 17, Rare Stories Film Project’.

Patrick Toland, CEO of NIRDP said, “In shining a light on the lived experiences of those navigating rare diseases, ‘Rare Stories’ offers an intimate and moving perspective that is too often overlooked.

“Dermot’s powerful narrative will not only help to raise awareness but also to ignite action.

“It is our hope that these stories collectively will serve as a call to policymakers, health professionals, and the public to ensure that the needs of every individual, no matter how rare their condition, are recognised and met.”

The NIRDP Rare Stories project was filmed by Andrew McCombe thanks to funding from the Rank Foundation, and a partnership with esc films.