We are Jakes parents and this is our story.
After a routine eye test that resulted in 6 months of appointments and tests (and the dreaded googling to find out what our son could have) the day arrived for us to get Jakes results at Grimsby Hospital, the date was 12 April 2012 a day we’ll never forget and a day that changed our lives.
Firstly we saw a doctor that couldn’t speak English very well and whose accent was so strong that neither Jake nor Trev could understand him (both are deaf), and I couldn’t understand the majority of what he said. He said he wanted to do some more tests, I refused and explained we were there for results only, he asked what results he flicked through jakes file (which is the thickness of my arm because of him being under audiology since he was 2) and said that Jake hadn’t got anything wrong with him, when I asked him about Ushers he said “that only effects deaf people” even the nurse was gobsmacked at what she was hearing, he ignored me and ignored Jakes look of fear and grabbed Jakes head and put drops in his eyes and then sent us out of the room, at this point Jake (who is normally a very placid boy) head butted a wall and it took both myself and Trev to stop Jake from leaving the hospital there and then. The nurse came out of the room and when we asked what was going on she told us to ask to see a consultant as this doctor didn’t know what he was talking about!!! When he called us back into the room he was still waffling which resulted in Jake, myself and Trev being in tears, the nurse stood up and said “I’ve had enough of this, follow me” she picked up Jakes file and left the room. She got us in to see a consultant within a few minutes, Mr Goel was very good, he was shocked when he heard what had happened and could only apologise when he had to break the news that Jake did indeed have RP and Ushers. He explained as much as he could about RP but admitted he knew nothing about Ushers.
We returned home in silence apart from the odd sniffle from one of us crying, Trev went to work (his way of putting things into perspective) Jake and I hugged and cried together for a while. My sobering moment was when Jake said “Mum we’ll just take it one day at a time and see what happens”, it was like our 13 year old grew up overnight.
Subsequently Jake was referred to Moorfields which is good as Jake has refused to go back to Grimsby unless it’s to an Audiology appointment.
Jake is amazing and deals with any situation with confidence and steely perseverance, we are so proud him and his attitude to life and having Ushers. Nothing stops him from achieving his goals. Jake has made Trev and I see life differently and all for the better.
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