🟢 Connect with a Parent/Family USH Peer Supporter

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I’m Eugene and I’m the father of Kidist who is Usher T1. Kidist is profoundly deaf from birth, her central vision is quite good but her peripheral vision is beginning to close and her night vision is very poor. Her balance is fair to middling. My wife and I try to enable Kidist as much as possible. We try to find ways for her to do things rather than reasons why she cannot. We are open with her about her Usher’s in an age appropriate way and talk regularly about how she is getting on. Kidist is growing into a very confident and resilient young lady with all the “normal” preoccupations and worries of a regular pre-teen/teen but, at least for the moment, no real worries about her Usher’s. 

Hi, my name is Kidist an I am twelve years old. I have Usher Syndrome Type 1. This means that I am profoundly deaf, I can’t see in the dark and I have bad balance. Nevertheless I am a sport person. I enjoy horse ridding, athletics and drama. I love reading and write my own stories, creating a new world full of eccentric characters to immerse myself into. I find it fun because I get to create a fun and interesting life for my characters. Keep an eye out for my name in your local bookshop in a few years! I am multilingual as well. I can speak more than two languages. I speak English, Catalan, Irish, some Spanish and I also use Irish Sign Language.

Eugene has very kindly volunteered to chat with other families dealing with a child/teen receiving an USH diagnosis, and throughout. You can email Eugene by clicking the link below.