When my mum was 8 months pregnant with me, she had Septicemia, so I had to be born a month early. The doctors provided me with medication in case I became unwell. They informed my parents about potential side effects, including the possibility of losing one or more of my senses. Therefore, both the doctors and my family believed that the medication might be the cause of my hearing loss and was told I needed cochlea implants.
At 18 months old, I had a cochlear implant operation on my right ear. Later, at the age of 11, I had the same procedure on my left ear. Growing up, myself and my family were unaware that a genetic condition was responsible for my hearing loss. Despite being the only deaf person in my family, who are all hearing, so I didn't learn sign language. Instead, I learned to lip-read and received speech and language therapy to improve my verbal communication skills. Additionally, at my secondary school, signing wasn't permitted, denying me the opportunity to learn alongside my fellow deaf friends.
I can't count how many times someone has approached me in complete disbelief upon learning that I am deaf, given the quality of my speech. While I do wish I had learned sign language, I am planning to do so soon to improve communication with my friends who use BSL. However, it's worth mentioning that I have often been told that I am quite loud and a talkative person. So, if you ever meet me, it's safe to say the encounter will be memorable!
Now, let's continue with my story. When I was 14 years old, I had a routine eye check-up with an ophthalmologist who wasn't my regular one. During the examination, she noticed some unusual spots behind my eyes and showed some concern. Consequently, she referred me to Moorfields Eye Hospital in London. They did several tests on my eyes and then they confirmed the diagnosis. I also had genetic testing at another hospital, which revealed the presence of the CDH23 gene, indicating that I have USH1D, a rare subtype of Usher Syndrome Type 1. This condition, characterised by profound deafness (present from birth), significant impacts my sight and balance. At the moment, my vision is most affected in dim and dark environments, and I am gradually losing peripheral vision. As a result, I find myself constantly turning my head to ensure I can see everything around me.
Before discovering that I had this genetic condition, I was just a deaf girl attending a school for the deaf and was preparing to start my GCSEs. After receiving my diagnosis, I'll be honest with you all, I was in shock and felt quite low for an extended period of time. The diagnosis not only raised many questions but also provided answers about myself. Growing up, I consistently faced challenges, such as difficulty seeing in the dark. Despite well-intentioned advice, like people telling me to "eat some carrots, it'll help," which, as we all know, wasn't the case, I also struggled with issues related to my balance.
I am currently twenty-three years old and happily engaged to my amazing fiancé. Our love story began when we were just 16 years old. We met online through mutual friends and instantly fell in love. In 2019, he proposed to me on the field behind Gretna Green, and now we are excitedly planning our wedding, set to take place in 2025!
Currently, I am employed as a teaching assistant in a wonderful school and studying part-time at the Open University to achieve my goal of becoming a teacher. When I turned twenty one, I connected with a remarkable woman named Chloe, who oversees a charity called UsherKidsUK. She invited me to participate as a mentor in their first ever camp, and without hesitation, I accepted!
The USHThisUK camp proved to be an incredible experience. The camp is for children with Usher Syndrome, it provides a platform for learning about the condition, connecting with others facing similar challenges, and engaging in enjoyable activities. Being part of this wonderful camp brought me joy, and I am thrilled to continue participating in future camps. It's worth noting that attending the first UK camp significantly boosted my confidence in managing my disability. It empowered me to face forthcoming challenges head-on and not allow my condition to dictate my aspirations and dreams.
Since attending this camp, I've had the pleasure of meeting many individuals who share experiences similar to mine, and it has been a wonderful experience. A few months after the camp, a fellow mentor and I were invited to represent the UK camp at the USHThis camp in the US, organised by Ava's Voice organisation. This opportunity was incredible, and I was thrilled to experience a summer camp in the US, a dream come true for me. One of the highlights was getting to do one of my favourite activities, horse riding! The camp was simply unbelievable, with the kids being absolutely lovely and a lot of the kids loved my English accent. I genuinely hope for the chance to go again and reconnect with all of them!
After the US camp, I returned to the UK camp and had the joy of reconnecting with everyone, it was truly unbelievable. I had the opportunity to meet even more people, and I also contributed by helping film the highlights of the camp. Participating in these camps just boosts my positive energy every time, thanks to the tremendous support from everyone involved.
At the USHThisUS camp, I was approached by Nancy O'Donnell, a member of the Usher Syndrome Coalition, who asked if I'd be interested in becoming an ambassador for the UK. Having completed my training, I am now prepared to discover new resources and assist those currently undergoing diagnosis, as well as parents of children with Usher seeking support or advice, or simply wanting a new friend.
Thank you for taking the time to read my blog. If you know anyone who has Usher syndrome or is interested in understanding it better, feel free to share my blog. I'll be posting as much as I can here and on my Instagram, which is @chloe_ushers.
If you'd like to know more about the camps, I will be posting links to their websites on this website!
