In the summer of ’98, my family were blessed with the arrival of a beautiful baby girl (that’s me!). But there was a twist – I failed my seven-month hearing check, prompting a series of tests. By eleven months old, I was officially diagnosed with severe bilateral sensorineural deafness and fitted with two hearing aids. Professionals advised that I shouldn’t learn sign language, insisting that verbal communication was more important, so as much as my mum wanted total communication for me, my BSL skills are unfortunately currently limited to the alphabet.

I was the youngest in a fully hearing family, with two older brothers. I attended mainstream schools, and deafness wasn’t a barrier for me; if anything, it gave me even more of a reason to push myself, to prove that I was capable of anything I set my mind to. Of course, school wasn’t without its difficulties, but I was proud to leave with a good set of GCSEs and A-Levels. I had a good group of friends, a loving and supportive family, and a stubborn head on my shoulders. Things were pretty straight forward with my health, too – I attended my routine check-ups, had new ear moulds as and when needed, and that was my life from diagnosis onwards. 

At nineteen, I was hit with a curveball. I was experiencing floaters in my vision – some like tiny bubbles, others like drifting cobwebs. After endless trips to ophthalmology, I was finally given the diagnosis of Usher syndrome in February 2019, on Valentines’ Day no less!

At the time of diagnosis, it was estimated that I had around 10º peripheral vision. I’d started driving lessons shortly before, but I was told in no uncertain terms that my driving days were over. It was disappointing to have that independence torn away from me before it had even started but to be honest, I hated driving lessons anyway!

After my diagnosis, I took a break from graphic design. I told myself that it was a stupid career choice because I was going blind. I went to university and lasted three months before dropping out and returning to the design career I’d spent so long working towards.

My vision hasn’t really changed since diagnosis, and my hearing has always been stable. Now, my goal is to share my experiences of living life with Usher syndrome, to be a source of support for people who are on the same journey as me.