Sisterly support for stargardts
Esme is registered as blind after being diagnosed in 2023
17 April 2024
After being diagnosed with stargardts, Esme was referred to Moorfields. Due to her condition, she was registered blind at just 15.
Esme is a very talented singer, actress and dancer. Although stargardts has no cure, it hasn’t stopped her. She continues to hold her head high and her whole family are in awe of the way Esme has continued to live her life.
At first, when I lost my sight, it was very difficult to adapt, I got loads of headaches and was very tired almost every day. However, now I’ve gotten used to it I continue to do what I love and not let it hold me back. Although my sight continues to worsen, I now have all the equipment I need to live an accessible life, and so much support from my family.
Moorfields is one of the best eye hospitals in the world and I feel very lucky to be a patient there. Stargardts came as a great shock to our family but we have tried to adapt the best we can.
Esme talking about her treatment at Moorfields
What is stargardts?
Learn more
Stargardt disease is a rare inherited condition affecting one in 8,000 to 10,000 people. In stargardt’s the light-sensitive layer of cells in the macular region of the eye degenerate. The macular is the area at the back of the eye which is responsible for the fine detailed vision necessary for activities such as watching TV and reading.
Esme’s attitude and positivity has been inspiring for those around her and we can understand why!
To anyone that has stargardts, it can be scary to know your sight is always slowly deteriorating, but try not to be scared as there is no point wasting time being afraid of what hasn’t happened yet, so continue with your life, hold your head up and stay in a positive mindset, you’ve got this!
Esme, when asked what she would say to anyone else receiving a stargardts diagnosis
Lillie is Esme’s older sister and wanted to show her support by taking on a fundraising challenge for Moorfields Eye Charity. On 5 May 2024, Lillie ran the Victoria Park Half Marathon- she only started running in February and was running up to five days a week to get ready for the big day!
I wanted to raise money for Moorfields Eye Charity as they do amazing things for people like Esmé, and hopefully the money I raise can go towards helping find a cure for stargardts and conditions like it. This charity is very close to my heart and means so much to my family as Esmé is our little star, she is my best friend and continues to amaze me everyday.
Lillie talking about why she decided to fundraise.
Esme is immensely proud of Lillie who raised over £2,500 and is blown away by the kindness of her family and friends.