family members' experiences of usher syndrome
adults living with usher syndrome
founder of usher kids uk, on usher syndrome awareness day
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. 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.
7 years ago I would not have been able to say the word ‘deafblindness’ without a shiver going down my spine. 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 knew not a single other person with Usher syndrome, and had never met another parent facing the same fears and challenges as us. Navigating this new world felt like a huge wall we had to climb, without any insight or experience to draw upon.
Roll on 7 years, and my attitude towards her condition is almost unrecognisable. I can talk openly about Usher syndrome without having to mask my feelings inside. I am supporting my daughter to develop and define her own identity, in a way that feels right to her. 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.
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. 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. For a rare condition such as Usher syndrome, this is pretty amazing!
But not every family is in a position to access this support. 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.
It was a few stark facts which prompted me to set up Usher Kids UK. Statistics regarding unemployment and depression amongst the adult Usher community. 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. 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.
Thankfully many pieces of the jigsaw of support that an Usher child and family needs are already in place. 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. 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. 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. So the unique challenges faced by children and families are often not fully met by single support services. 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. Support for these, and many other challenges, is exactly what Usher Kids UK exists to provide. 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. 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.
One day, a cure might exist for Usher syndrome, or a treatment which saves our children’s sight and hearing. Many of us live with the hope that will happen before our own child is impacted. However, as parents we want and need to be able to look to the future with more than just crossed fingers and our breath held – we need support for the here and now, to equip our kids with the strength to withstand the challenges ahead, come what may, and to live life to the fullest that they so utterly deserve.
At Usher Kids UK we will continue to provide connections, support, information and advocacy for our children and families living with Usher syndrome.
A single connection for a newly diagnosed family can change the course of life for a person with Usher syndrome, and providing this opportunity will help the next generation tackle the challenges faced with the strength needed to overcome them.
Thank you
Chloe x
7 years ago I would not have been able to say the word ‘deafblindness’ without a shiver going down my spine. 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 knew not a single other person with Usher syndrome, and had never met another parent facing the same fears and challenges as us. Navigating this new world felt like a huge wall we had to climb, without any insight or experience to draw upon.
Roll on 7 years, and my attitude towards her condition is almost unrecognisable. I can talk openly about Usher syndrome without having to mask my feelings inside. I am supporting my daughter to develop and define her own identity, in a way that feels right to her. 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.
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. 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. For a rare condition such as Usher syndrome, this is pretty amazing!
But not every family is in a position to access this support. 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.
It was a few stark facts which prompted me to set up Usher Kids UK. Statistics regarding unemployment and depression amongst the adult Usher community. 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. 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.
Thankfully many pieces of the jigsaw of support that an Usher child and family needs are already in place. 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. 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. 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. So the unique challenges faced by children and families are often not fully met by single support services. 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. Support for these, and many other challenges, is exactly what Usher Kids UK exists to provide. 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. 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.
One day, a cure might exist for Usher syndrome, or a treatment which saves our children’s sight and hearing. Many of us live with the hope that will happen before our own child is impacted. However, as parents we want and need to be able to look to the future with more than just crossed fingers and our breath held – we need support for the here and now, to equip our kids with the strength to withstand the challenges ahead, come what may, and to live life to the fullest that they so utterly deserve.
At Usher Kids UK we will continue to provide connections, support, information and advocacy for our children and families living with Usher syndrome.
A single connection for a newly diagnosed family can change the course of life for a person with Usher syndrome, and providing this opportunity will help the next generation tackle the challenges faced with the strength needed to overcome them.
Thank you
Chloe x