Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Ana Carys

Ana Carys is a lovely, friendly girl whose beauty and fragility hides a quiet strength and determination.  Once she sets her sight on something there is very little that will stop her which can also make life a challenge for her parents.

Her favourite film is Frozen and she loves to dance and sing along to the music.  Her brother, David, is often expected to do role play with her and she loves to dress up as her favourite character.

It took two long and lonely years to get a diagnosis of Moebius Syndrome and even then it was not simple as her symptoms are not straightforward.  Amongst issues such as limited facial movement, eye squint and low muscle tone, which has meant she used a wheelchair for much of her childhood so far, she also has a very high pain threshold.  It took a long time for Ana Carys to start to speak and even to this day she takes quite a while to process information and to get her words out.  This means people often underestimate her and rather than speak to her they address her parents or carer which is hugely frustrating for Ana Carys.

When asked why awareness was important her mother, Esther, explained “Sometimes I catch people staring at Ana Carys and this is so hard to deal with.  I know people are sometimes just curious but she is my daughter and I want people to treat her just like everyone else.  If they gave her a chance to speak they would realise what a bright and funny girl she is.”

“We were happy to take part in the Rare Project as awareness is so important.  With Ceridwen’s images I believe she captures the soul of Ana Carys and I want other people to see that.” Explained Esther.

The aim of the Rare Project is to highlight the person behind the rare disease and whilst doing so raise awareness of rare disease.  If you would like to support the work that we are doing to highlight rare disease either by fundraising or by becoming an ambassador please contact us.

You can meet more people who are taking part in the rare project by clicking here.