'Tennis helped me come to terms with Usher syndrome diagnosis'
Neil, from Liverpool, has shared his story as part of BBC North West Tonight's six-part series about living with invisible disabilities and conditions.The former first aid and lifeguard trainer, who has been wearing hearing aids since the age of six, first started to notice issues with his eye sight when he was 12 years old. But it was another seven years before his diagnosis was confirmed. "It was horrendous, absolutely horrendous," said Neil."My mum went with me and she was crying her eyes out when they told me because, that was the other thing back then, nobody could tell you anything."It would be 'you're going to lose your sight but we can't tell you when'."More than 400,000 people are estimated to have Usher syndrome across the world, according to the Usher Syndrome Coalition.Neil said he struggled to accept the news: "I just went into denial, isolation and stayed there for an awfully long time."It's thinking, well, I used to be able to do that last year, this summer the sun is affecting me an awful lot more, this winter I'm absolutely dreading it because it will be worse than the last one."Every year I realise something else has progressed."
But he said his life began to open up again after discovering Bradbury Fields - a charity which helps blind, and partially sighted people, and those with dual sensory impairments to achieve their potential.Through the charity, Neil found tennis, which he has credited with helping him come to terms with his condition."I didn't pick up a racket until 2017 and that was just a taster session on these courts. [I'd given] up on sport," he said"Your sight starts to deteriorate, and you think, 'oh, that's it'."As narrow as my life became, when I acknowledged that it was an issue and I sought help, then my life started opening up again."As his love of the sport grew, Neil decided to start competing. "In 2019, I thought 'right I'll give the regionals a go'," he said. "I won the regionals - I was in total shock and I've been competing ever since. "I've been in the GB squad for five years, played at Wimbledon twice. "It's opened so many doors."Neil's story features in a special six-part BBC North West Tonight series about invisible disabilities and conditions. You can watch it on BBC One in the Northwest of England and the Isle of Man from 18:30 BST on Wednesday 9 July. It will also be available on the BBC iPlayer.
Listen to the best of BBC Radio Merseyside on Sounds and follow BBC Merseyside on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
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