Evan Molloy was born with ocular albinism and was diagnosed with epilepsy at the age of four. With the help of British Judo and the Epilepsy Society, The 24-year-old from Devizes was born with ocular albinism, which causes visual impairments. He has had glasses ever since he can remember, despite “hating wearing them” as a child. Evan was diagnosed with epilepsy at the age of four – a condition which affects the brain and causes frequent seizures. Between the ages of 17 and 20, he was having up to 40 seizures per week, which had a “dominating” effect on his life.
He said he became an insomniac because every time he slept, he had a seizure. He would often wake up after regaining consciousness from a seizure with severe burns on his face and ankles due to “falling out of bed and rubbing his face”.
Albinism affects the production of melanin – the pigment that colours skin, hair and eyes – and can cause poor eyesight.
Evan’s condition means he has to wear glasses to prevent “discomfort” from light sensitivity, he uses a larger font on his phone, and his skin burns very easily in the sun.
He said he “hated” wearing glasses as a child, breaking between 10 to 20 pairs, as he did not want to be “different”.
Evan started doing judo when he was 13 years old, and it quickly became an “obsession”.
He explained that he was “on the chubbier side” in his younger years, but this soon changed after joining his local judo club in Devizes, and he then spent the following years training and travelling “up and down the country, going to every single competition that he could”.
The grueling effect of his epilepsy saw his Tokyo 2020 Paralympic Games dreams dashed, and almost forced him to quit judo altogether – a sport he “absolutely loves”. However, with the help of British Judo and the charity Epilepsy Society, Evan was placed on a waiting list to undergo video telemetry – a brainwave investigation – to learn more about his condition and how it impacts him. He was then able to receive the appropriate medication to get his epilepsy “under control” – and amazingly, he has not had a seizure since December 13 2019. He said: “When I didn’t have the seizures to think about any more, I was able to feel so many different emotions that my body just wouldn’t let me feel because of everything I had going on. You don’t realize what you’re going through until you’re able to look back on it.”He added: “Because of what they have done for me, I have now been able to put in the best attempt possible at achieving at the highest level of doing the thing that I love doing.”Evan has competed all over the world.
The reason for being a patron for the The Voice For Epilepsy is I am a professional athlete/Paralympian and I would like to use my platform and my story to raise as much awareness as possible about the condition as not everyone is as lucky as myself to get the support needed.
