1. ITV Report

Photographer raises awareness of rare conditions through art

Ceridwen hopes to raise awareness of her son's condition through photographic art Credit: Ceridwen Hughes

A mother is using photography to show a different side to her eight-year-old son whose rare condition means that she has never seen him smile.

Ceridwen Hughes from Flintshire has set up her own photography company called Same But Different Community Interest Company with the help of lottery funding.

Her son, Isaac, has lived with Moebius Syndrome, an extremely rare condition that affects muscles that control facial expressions and eye-control, from birth.

Ceridwen has received funding from the Big Lottery Fund. Credit: Ceridwen Hughes

She's one of 66 community projects across Wales receiving a share of £250,951 under the latest round of the Big Lottery Fund’s Awards for All small-grants programme.

With the help of the lottery funding, £5,000 will be used to raise awareness of rare diseases and syndromes.

Ceridwen hopes to counteract prejudice of people with rare conditions Credit: Ceridwen Hughes

When Isaac was initially diagnosed our whole life was turned upside down. Whilst this was a really hard time it is the relentless need to explain his condition over and again that has been the hardest. We also found that many of the images on the internet were really depressing and not really reflective of people or their personalities.

Because Isaac’s condition affects him facially we often feel a need to explain what it is and how it affects him so they do not make assumptions. Isaac has limited speech and can show only a small amount of expression and yet he is also a funny, strong willed, bright and has an amazing sense of humour, he loves football and doesn’t let anything stand in his way!

Some people cannot see past the condition and this is very frustrating. It is for this reason I decided to use my skills as a photographer to encourage people to look beyond those first impressions.

– Ceridwen Hughes, Photographer

Watch Ian Lang's report: