We are pleased to announce our Stargardt’s Star for September, Kamara 🌟 Here is Kamara’s story:
My journey with Stargardts started in Lagos Nigeria, when at the age of 6. I was having difficulty reading and I went to the optometrist who prescribed my 1st pair of glasses. In a few weeks I lost the glasses and I had to go for another test; where I was then referred to a consultant eye ophthalmologist. The ophthalmologist was surprised at the level of my vision loss but unfortunately at the time, further testing was not available in Nigeria.
In December 2019, I travelled to New York city with my mom in search of answers. I met with one of the best paediatric ophthalmologists at Columbia University medical center and went through a series of testing. At my 1 year follow up appointment in December 2020 I finally got my diagnosis of Stargardts disease.
Living with vision loss in Nigeria was very challenging as I attended a mainstream school where there were no accommodations for my needs. I quickly learnt how to speak up and advocate for myself and was able to get my teachers to have me seated at the front row and make use of magnifiers for reading.
This experience led me to start my IG page Kamara Ohiaeriaku and I was able to organise a fundraiser for Pachelli school for the blind and visually impaired in Nigeria where I donated cash and items to support them. In 2022, we moved to the UK and since then, I have been able to access more support in school, which has helped me continue learning while also becoming more confident about asking for what I need.
I am passionate about advocating for people with additional needs, especially people living with invisible disability. I have had the opportunity of speaking in my school’s assembly and working with my head of year to raise £210.80 for Stargardts connected. I love swimming, learning about random fun facts, listening to music, writing and I am currently working on publishing my first book!
PD1: a photo of Kamara wearing black trousers, a red t-shirt and black cardigan.
PD2: a photo of Kamara presenting a cheque to Pacelli School for the Blind
#StargardtsConnected #Stargardts #StargardtsStar #CharityCommunity
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