We are raising funds for a local girl aged just 15 who was registered blind in December 2023. She was diagnosed with Stargardt disease. Which is a rare juvenile macular dystrophy causing loss of central vision. The macular area at the back of the eye which is responsible for fine detailed vision (i.e. reading) degenerates, leaving loss of detailed vision, blind spots, blurriness and difficulty in low light. Stargardt disease is currently untreatable, although researchers are involved in stem cell trials in Europe.

She is on the long list for guide dog but is in need of some items now to help her day to day life. We are looking to raise enough funds for an accessible laptop and a Perkins Brailler.

We will be doing a number of fund raising events over the coming months and any help is so much appreciated.

A few words from her family, helping us to understand.

She is a very beautiful, kind, caring, talented young lady who was (is) destined for great things. Last year she was working towards her grade 4 piano exam when she began to have trouble reading her sheet music. The white board at school was not clear either. I took her for a routine eye test although she wasn’t due for one for another year. When we got there Esmé was unable to read ANY of the letters on the chart. We were very confused. They did the colour blind test and she failed that too. We were referred to Hinchingbrooke Hospital as an emergency. We couldn’t understand what was going on. After tests at Hinchingbrooke we were transferred to Addenbrookes hospital for more tests and eye scans. Sitting in the doctors office as he broke the news to us that there was no cure or treatment for Esmés eye condition broke our hearts . She was only 14. All he could tell us was that there were a lot of support groups that we should get in contact with.

A month before Esmé turned 15 she was registered as partially sighted. A month after she turned 15 she was registered Blind. ( severely sighted impaired).

We are heart broken .

Luckily Esmé is a very strong girl and has a brilliant positive attitude to life and is determined to not let her condition stop her from doing the things she loves . Of course life is much more challenging now but with help and support I know she will continue to have a great quality of life, singing ,acting, dancing and playing music as before. She also loves cooking.

As a family we feel very grateful for your offer of fundraising to help Esmé continue to do the things she loves. She loves studying is currently revising for her GCSE exams.

A Perkins brailler would be an amazing addition to her studies or an accessible laptop.