In 2016, Amy was 14 and was diagnosed as visually impaired due to a neurological condition called Visual Snow Syndrome. She describes the syndrome as continually seeing small dots and flashing lights. As well as having her visual impairment Amy also has complex medical conditions which means she has chronic pain that effects her day to day life.
Since the diagnosis, Amy’s vision has deteriorated further.
‘I am now totally blind at night and in bright light. During the day I need to use glasses with a strong tint as my photophobia has got worse. It makes it difficult when I go out, I can’t distinguish between grass and the pavement or depth perception on uneven ground or steps.’
When reflecting on school Amy can remember how difficult things were.
‘When I was diagnosed I was in year 10 and I had to miss a lot of school. The teachers didn’t understand my visual impairment and work wasn’t made accessible. I also had a Teaching Assistant that would follow me everywhere, even stand outside the toilet. I struggled to make any friends and felt very isolated.’
‘I found out about RNC and came on one of the Have a Go weekends. Straight away it felt like the right place for me. Everyone was so understanding and I didn’t feel out of place. It was easy to talk to people and you could tell it would it be a place I could fit in.’
Amy applied to study to the College but getting her place wasn’t straightforward.
‘The Local Authority said no to RNC in the EHCP meeting and instead recommended that I attend a local college, saying it could meet my needs. We decided to skip mediation and appeal that decision. We had to gather a lot of evidence for the tribunal, things like medical information and a report from the Educational Psychologist. It was a very draining and stressful time for me and my family.’
‘The process was long so I reluctantly decided to start at the local college. Even though they promised it would meet my needs, it didn’t. They gave me a Teaching Assistant that continued to followed me and even done my work for me! The college was not accessible and I was struggling to get around. I had drop out after a few months but continued to do my work from home and managed to get a Distinction Star grade at Level 2 for Health and Social Care by having virtually no help.’
The Local Authority eventually conceded and named RNC in the EHC plan.
Since starting RNC I have been able to put some of that behind me. I never thought I’d achieve anything because of all the barriers that I have had to face. I now believe that I can have a future. I am hoping to have work experience at Shrewsbury Hospital to explore some of the roles that I might be able to have a career in, as I am starting to think about applying for university. I never thought this would be possible.’
Recently Amy was runner up in the 2019 Guide Dogs Annual Awards in the category of Inspirational Young Person of the Year. An incredible achievement that she, her family and RNC are very proud of.