One day, a cure might exist for Usher syndrome, or a treatment which saves our children’s sight and hearing. Having a focal point for our community of families gives a louder voice in identifying improvements needed for services, and also advocating for increased funding towards research. Building a network of families and professionals which understand these challenges means that families can easily access the information they need, allowing them to focus their energy on their child. Support for these, and many other challenges, is exactly what Usher Kids UK exists to provide. The emotional burden of the diagnosis haunts many families for years, and the uncertainty surrounding their future can be very hard for young teenagers to accept and process. So the unique challenges faced by children and families are often not fully met by single support services. But having Usher syndrome is a combination of these challenges, compounded by the fact that deaf people rely on their vision much more than sighted people. Likewise, when a child starts to notice changes to their vision the family is introduced to vision impairment services, and another relationship of support begins.

Support services for hearing loss are often fantastic, and many provide emotional support for the family as well as practical help from the early years and beyond. Thankfully many pieces of the jigsaw of support that an Usher child and family needs are already in place. I knew that if I couldn’t accept this for my own child, then I wouldn’t accept it for anyone’s child, and Usher Kids UK was born. These were not figures I could accept, especially when I looked down at my baby girl, and saw her looking back at me filled with just as much hope, laughter and personality as any other child. Statistics regarding unemployment and depression amongst the adult Usher community. It was a few stark facts which prompted me to set up Usher Kids UK. Not having a network may mean families feel stuck with the fear and isolation, and don’t have confidence that their child is getting the services they need. For a rare condition such as Usher syndrome, this is pretty amazing!īut not every family is in a position to access this support. It gives me the backstop of camaraderie, so that when we face decline or progression in my daughter’s condition I can immediately reach out to someone who gets it. This network of support gives me the strength to champion my daughter’s needs, and to know where to turn when the next challenge presents itself. I have met countless people with Usher syndrome, and regard my Usher family – a network of families, individuals and clinicians – amongst my most treasured acquaintances. I am supporting my daughter to develop and define her own identity, in a way that feels right to her. I can talk openly about Usher syndrome without having to mask my feelings inside. Roll on 7 years, and my attitude towards her condition is almost unrecognisable. Navigating this new world felt like a huge wall we had to climb, without any insight or experience to draw upon. 7 years ago, I knew not a single other person with Usher syndrome, and had never met another parent facing the same fears and challenges as us. 7 years ago, the dominant feeling I had when I looked towards my daughter’s future, with my baby girl in my arms, was fear. 7 years ago I would not have been able to say the word ‘deafblindness’ without a shiver going down my spine. This year, marks 7 years since our daughter’s diagnosis of Usher syndrome, and therefore 7 years of our eyes being open to the world of deafblindness. Every time a milestone or fundraiser comes around it gives me the chance to check in with myself and see where I am up to with regards my own perspective on Usher syndrome.

Usher daughter