A little about us and our story, we have a little boy called Ashton who is 7 and half. He was born profoundly deaf and at the age of 2 and a bit he received the operation for bilateral cochlear implants at Great Ormond Street. We’ve spent so much time to and throw various appointments up there for audiology, speech and language and ENT. Was the best decision we ever made for him as he’s now thriving in main stream school at St Crispins in Westgate. His communication and speech is still delayed but he’s catching up with his peers nicely. 

He’s an avid football fan supporting Manchester United and Juventus because of Christiano Ronaldo, he literally sleeps, breaths and eats football. He also plays for our local Thanet Colts U7’s Team. 

In October last year we had a routine appointment up GOSH for a specific eye test that his consultant wanted him to have. Unfortunately at that appointment we was told he has the rare genetic condition ‘Ushers Syndrome’
At the time myself, Ashtons dad and none of our family and friends knew what it was. I came away from GOSH that day feeling like my world had came crashing down again just like the day I was told my 3 week old baby was profoundly deaf. It was raw for the first 3/4 weeks..all I kept doing was searching the internet..reading other people’s experiences, looking for a something that could possibly slow down the process of his eye sight deterioration. I connected with a couple of parents in the USA who have children with ushers and I found that supportive.

 
Then I was pointed in the direction of Joanne White, founder of CUREUsher. She has Ushers herself and is working hard to try and find a cure as at the moment there isn’t.

The way I’m dealing with it is to try and help to find that cure by raising as much money as I can. Alongside this just giving page we are also holding a charity fundraiser on 14th March. 

Thank you for reading our story.

Frankie

ICUREUsher is a patient-led charity raising funds to increase collaboration and research into a cure/treatment for Usher Syndrome, the leading genetic cause of deafblindness. CUREUsher is a registered charity in England and Wales, number 1181293