The past year hasn’t been the easiest for my family. In the winter of 2016, I was on the phone with my parents, when they first mentioned something might be wrong with my sister Jessie’s eyesight. My phone signal was bad, and I was on a break at work, so I didn’t really get the full message. I guessed she probably just needed glasses – most of us in my family do.
It was only a few weeks later when I found out she had a referral to Moorfields Eye Hospital, that I really realised the severity of what was happening. By that time, her identical twin had also been to the optician’s and they had found similar symptoms with her – an unusual area on the back of her eye. It was the first of many appointments at Moorfields, one of the leading providers of eye health services in the UK. Each time, there was a little bit of hope that maybe it might not be that bad after all.
I remember the day of their final appointment pretty well. This was the one where we would be getting a definitive diagnosis, as well as an idea of how severe it would be. I was meant to be in lectures for my Master’s, but I didn’t feel I could sit through it without panicking. As a distraction, I ended up heading to the cinema to watch ‘Beauty and the Beast’ – but when I left and headed to meet up with them post-appointment, the dread had set in again.
When I got to their hotel, they gave me the news. They were both given a diagnosis of Stargardt’s Disease – something that we had suspected for some time.
What is Stargardt’s Disease?
Stargardt’s Disease is a recessive, genetic disorder, that causes fat to collect on the back of your eye – specifically, the central part of your retina, called the macula. It’s the most common form of inherited, juvenile macular degeneration, and symptoms commonly appear in childhood or during your teenage years but can go unnoticed until later in life. In the beginning, central vision becomes blurry and loses colour, before losing sight in that area completely. It is rare for those with Stargardt’s to become completely blind, but many are left with only peripheral vision. It typically starts slowly, before becoming more rapid and then tapering off in later years.
The news broke our hearts, but obviously, the primary impact was felt by Amy and Jessica. They are both currently in their final year of university, and both previously took time out of their degrees because of poor mental health. The news came just as Amy was returning to her second year at Cambridge University to study Veterinary Science. Jessie was starting her year out from the University of Exeter, where she is studying Animal Behaviour. Both of their plans have had to drastically change following the news – Amy will not be able to practice as a vet (unlike doctors, vets must be able to conduct surgery, which you cannot do if you are visually impaired.) Jessie has always wanted to work with big cats but now has to decide what she can do with impaired vision. She recently had the opportunity to go to Africa with her university, which we made sure she could undertake – because we didn’t know if she’d be able to see them again.
Doing things because we don’t know if Amy and Jessie will be able to see them again is a common thing at the moment. And not something we ever thought we would have to consider in our family. At the end of the day, we are glad that we are in a position as a family that we can make these things happen – we know some other people aren’t fortunate enough to have these opportunities. We’re a strong family unit, that can support them, and each other, through the uncertainty ahead.
We will be taking part, as a family, in ‘Eye to Eye’, a sponsored walk raising money for the Moorfields Eye Charity. They support many individuals and families going through a similar experience, as well as funding new research that aims to make blindness a thing of the past. We are proud that as a family we can participate in an event like this to not only raise money for a worthy cause but raise awareness of sight problems like Stargardt’s.
I understand that money is tight right now – no one has as much of it as they would like! But even a couple of pounds thrown in our direction can make a difference towards our goal of £600. So please, if you can, make a donation. We would really appreciate it – and it would make walking for nearly four hours (with my family) seem worth it!
You can make a donation by clicking here.