Holly Evans 6, has a rare disease which means she is at risk of a stroke and can’t walk unaided - but she doesn’t let it stop her from doing all the things young girls love.
The young Dalestoft Primary pupil recently took part in a photographic project called Rare by a charity called ‘Same But Different’’
Set up by photographer Ceridwen Hughes, the project uses the arts to raise awareness of disability and counteract prejudice that exists. Her latest project specifically focuses on those with rare diseases.
Holly’s mum Kelly Cleveland said; “ Holly is a very happy six-year-old. She loves school and learning new things. She especially likes to write stories and to draw.
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“Her school friends are very important to her and she loves to spend time with them playing. Holly is quite girly and likes dolls and princess dresses.
“On the day she came to the studio for her photo session she was very proud of her shiny new shoes and really wanted me to make sure people could see them in the photos.”
Holly has Glutaric Aciduria Type 1 which is a genetic metabolic disease in which the body is unable to process certain proteins properly.
As it was not diagnosed early enough she suffered brain damage.
Although her cognitive abilities are not affected, she is unable to walk unaided - but she can get around and walk short distances with the aid of her frame.
When holly is ill she is at risk of a crisis and to prevent this we follow a strict emergency dietary plan when she is ill. Kelly, 38 added: “Holly’s speech can be a little slurred which can make it difficult for strangers to understand her.
“Sometimes people will ask us a question rather than directing it at her which is frustrating. “When I look at Holly I don’t see her wheelchair or frame. I see a kind, happy, clever, beautiful girl who I am so proud to call my daughter. “I hope this project can help others to see Holly and other children like her for the amazing children that they are.” For information on ‘The Rare Project’, visit www.samebutdifferentcic.org.uk.