Ella’s Story

Throughout my life I was told that I wouldn’t be able to do things because of my eye and no one other than my parents encouraged me to try. This is my story of how I proved them all wrong!

Hi, I’m Ella, a 21-year-old Postgraduate student from East Anglia and I have Microphthalmia in my right eye. Throughout my life I was told that I wouldn’t be able to do things because of my eye and no one other than my parents encouraged me to try. This is my story of how I proved them all wrong!

My diagnosis as a baby and finding MACS

I was diagnosed with Microphthalmia when I was 6 weeks old at my local hospital, though medical staff had suspected as much when I was 11 days old, yet didn’t think this was something my parents needed to know at the time. From 6 months old I would begin to go to Great Ormond Street Hospital and Moorfields Eye Hospital in London at least once a year, sometimes a lot more, until I was 16. Talking to my parents now when they heard the news of my eye condition, they wanted to get as much information as they could so they were as informed as possible on what my life could look like. The information they found didn’t give them much hope. In 1999 the only articles they could find came from America and suggested that the eye was removed. Fearing the unknown and not knowing what was in store for their new-born daughter and our family, we found MACS. It was through MACS that we were exposed to this new side of Microphthalmia and what it meant to me. A side with hope. We met wonderful people who were just like me and found an amazing comfort in Dr Nicola Ragge who helped us to understand the medical side of Microphthalmia. We found that I had one of the mildest cases in the country at the time and the size difference between my eyes was not too severe but still required me to wear a prosthetic shell, and so we began that process.

My journey with a prosthetic shell

Throughout my years wearing a shell there were many ups and downs. My face was very symmetrical when I was little, though they understood that I would need to wear a shell every day to encourage skeletal growth to remain this way. Though by the age of 8 or 9 they changed their mind and said I did not need to wear one if I did not want to. I jumped at this opportunity as I hated putting it in! This soon changed as just 3 years later they would notice that my right eyebrow seemed to be a little lower than my left and so began the process all over again, though this time I had an end date of when I didn’t need to wear it anymore. I stopped growing at the age of 15 and one long year after that I was allowed to stop wearing my shell and that is exactly what I did. I have not worn my shell in over 5 years and have not been to Moorfields since I was 17 and have been discharged from their care. Yes, I am aware that this is not common at all, but it is how I feel most comfortable and since I do not wear my shell, I do not need to see the amazing staff at Moorfields. (Don’t worry, I was discharged on the basis that I go to my opticians every 12 months and am currently being seen by surgeons at Addenbrook’s hospital in Cambridge who check my eye health at every visit) I felt that it was important to remember that a shell was not only for medical purposes but aesthetic purposes too, and once those medical reasons were no longer there, along with my doctors approval I chose to stop wearing my shell altogether.

Thinking back I believe one of the reasons I stopped wearing it is because I didn’t like how it made me feel, as well as the fact that I didn’t recognise myself with it in when I looked in the mirror. I have light perception in my right eye and having that blocked out made me kind of uneasy. I am definitely more aware of that now then I was at the time. When I was young I hated flash photography because it gave me bright floaters and just made me feel uneasy, little did I know that this was because light was entering my right eye and stimulating a part of my brain that can go weeks without doing anything. Now, when light enters my eye it gives me something my mother and I call ‘happy brain’ and that is the only way I know how to explain it. It makes my brain feel happy because it is getting that stimulation it doesn’t normally ever have.

Secondary School

During my primary and secondary school my mother fought tooth and nail for me to be treated like the other students

During my primary and secondary school my mother fought tooth and nail for me to be treated like the other students and for them to overlook my condition, though this proved hard. Between taking me out of school for doctors appointments and a surgery when I was in year 3 and random visits by health workers at the school, it seemed to feel that they didn’t think I belonged in their mainstream school, despite at the time not knowing I had any other issues that would cause them to think this. During year 9 I was found to have dyslexia and what they called ‘a gap in my early years education’, later when my parents would bump into my old teachers they would tell them this and they all replied with the same statement, ‘I thought so’, though never thought to help me. 3 years later this would be conformed again officially, and I was also diagnosed with Dyspraxia tendencies. When it came to looking at our next steps after high school, everyone from my year was invited to go look around the local sixth form. Everyone except for 3 people. I was one. The school had come to the conclusion that I didn’t need to be thinking about doing A-levels or anything like that and I should be thinking about a vocational course. They took away my option to choose my future for myself. So, I took it back. I left high school with 7 GCSE’s including English and Maths and went to sixth form where I did 3 A-levels and left with an unconditional offer to do a degree in Philosophy at Anglia Ruskin which I completed and am now working on my MA in History.

Throughout my life there have always been adults telling me that I wouldn’t be able to do something because of my eye, and wouldn’t even let me try to see if I could. All of those horrid thoughts that I wouldn’t be able to have a ‘normal’ life and that I would need to be in my parents’ care all my life. I am sure many of you have heard the same about your child and I want you to know that it isn’t going to be like following a macabre textbook.

I went to mainstream schools all my life. (Did it suck? Of course, it’s high school!)

I passed my driving test when I was 17 with no provisions and I love driving. (I hate parallel parking with a vengeance!)

I have a degree in Philosophy and I am doing a Masters in History! (Yes I know I said I would never go back to education but it’s like when you have a bad hang over and say you’ll never drink again).

I worked from the age of 16 to help me be independent and I have lived away from my family home for 4 years.

I am planning on having the most ‘normal’ life possible! But my version of normal. Pushing boundaries, making my own limits and having a fun life with my partner and our families. 

You or your child could have the life everyone is telling you you’ll never have and push all the limits they place in front of you. You make your life how you want because you are the one who has to live it. I know I would have never had the confidence to be where I am today if it wasn't for MACS and the support they gave me and my parents!