15th september 2018: usher syndrome awareness day
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15th September: Usher Syndrome Awareness Day 2018…. 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, 2018, 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 this is me, and this is someone who feels confident and empowered to go out and meet and advocate and build networks. For every parent like me, there will be many that aren’t in a position to empower themselves in this way. Not having a network may mean they 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. I read that the unemployment rate for adults with Usher syndrome was 80%. This in a community where there are no associated learning difficulties, just accessibility issues. I went to a conference and heard that the suicide rate in the Usher community was significantly higher than the national average. 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 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 often provide emotional support for the family as well as practical help from the early years and beyond. Likewise, when a child starts to lose 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.
On 22nd June 2019 the largest gathering of children with Usher syndrome in the UK will take place. This family event, organised by Usher Kids UK, with help from Jeans for Genes and RP Fighting Blindness, will be the first time this unique community has come together, and will provide kids and their families the chance to have a day entirely focused on them and their needs. Support services will come to them, rather than the other way around. A network of people that understand their challenges will be on their doorstep, rather than at the other end of the country or globe. This first event represents an important milestone in the community finding strength in each other, and taking ownership of the solutions to the challenges faced.
A close friend is running the New York marathon this year, and raising funds for Usher Kids UK and our 2019 family event with every step she takes. Please support her in making the UK Usher community stronger and more connected than ever:
https://www.justgiving.com/fundraising/caroline-canty
With all of my heart, I thank you for making a donation which makes this event possible. 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 this is me, and this is someone who feels confident and empowered to go out and meet and advocate and build networks. For every parent like me, there will be many that aren’t in a position to empower themselves in this way. Not having a network may mean they 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. I read that the unemployment rate for adults with Usher syndrome was 80%. This in a community where there are no associated learning difficulties, just accessibility issues. I went to a conference and heard that the suicide rate in the Usher community was significantly higher than the national average. 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 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 often provide emotional support for the family as well as practical help from the early years and beyond. Likewise, when a child starts to lose 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.
On 22nd June 2019 the largest gathering of children with Usher syndrome in the UK will take place. This family event, organised by Usher Kids UK, with help from Jeans for Genes and RP Fighting Blindness, will be the first time this unique community has come together, and will provide kids and their families the chance to have a day entirely focused on them and their needs. Support services will come to them, rather than the other way around. A network of people that understand their challenges will be on their doorstep, rather than at the other end of the country or globe. This first event represents an important milestone in the community finding strength in each other, and taking ownership of the solutions to the challenges faced.
A close friend is running the New York marathon this year, and raising funds for Usher Kids UK and our 2019 family event with every step she takes. Please support her in making the UK Usher community stronger and more connected than ever:
https://www.justgiving.com/fundraising/caroline-canty
With all of my heart, I thank you for making a donation which makes this event possible. 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
For this section we have reached out to the diverse and inspirational Usher community, asking them to share their experiences and give an honest account of their life living with Usher syndrome. We hope that you will be able to gain insight and encouragement from the stories shared here.
family members' experiences of usher syndrome
adults living with usher syndrome
