Usher syndrome is a rare genetic condition which causes hearing loss, progressive vision loss and in some cases, difficulties with balance (vestibular dysfunction). There are up to 2,000 children and young people aged 0-25yrs living with Usher Syndrome in the UK, many of whom have benefitted from information, support, connections and advocacy through Usher Kids UK. We recently awarded this empowering charity £10k and spoke to its founder, Chloe Joyner about what an impact their work has on the community of families they support…
When the statistics don’t tell the story.
While many services address the individual symptoms of Usher syndrome in isolation, none address the combined impact of dual and progressive sensory loss. Following her daughter’s diagnosis, Chloe herself was under the assumption there would be a pathway or support network, only to find “this giant gaping hole of unmet need”.
Simultaneously, Chloe found the statistics associated with the condition were unacceptable and avoidable:
- The average unemployment rate for adults with this condition is 80 percent.
- Severe mental health distress for adults with Usher Syndrome is six times the national average.
“So there I was bringing up this young girl who was larger than life, and capable of anything she put her mind to, and it just didn’t compute that she would be expected to transition to adulthood with these outcomes being the norm.” Chloe explains, “And I knew I didn’t accept it for her. And then about two heartbeats later, I knew I didn’t accept it for anyone else’s child, and the charity was born.”
Fulfilling a need for connection.
Usher Kids UK was created out of a need for support for families living with Usher syndrome. “As any parent knows, we’re all winging it all the time and actually what you often do is try and just pitch yourself amongst your peers.” Chloe has observed, “When you get a rare diagnosis, you immediately lose your peer group. I had no one that I could say, ‘how did you tell your profoundly deaf child they were going to go blind?’.”
So Usher Kids UK hosts events and virtual chats, to facilitate those conversations. Events are all free, and enable informal conversations and connections to take place, as the charity knows firsthand, the expertise sits within the parent community.
Respecting each family’s journey
Crucially, the charity recognises that parents need to engage on their own terms. It’s a progressive condition, so some parents choose to delay telling their children that they have Usher Syndrome until they’re older. And its this kind of insight that makes the organisation so attuned to the needs of the families it works with:
“We run three events every year and we always make sure that one has no branding and no information sessions about Usher syndrome,” says Chloe, “That’s because many parents don’t want to be forced to have conversations that they don’t feel ready for.”
A bridge between families and professionals
Of the people Usher Kids UK work with, around 60% are families and 40% are professionals. This outreach work with professionals is vital because many services currently do not address the needs of families living with progressive sensory loss, which leads to a lack of engagement from families, which in turn creates a cycle in which services don’t know how to evolve.
The charity’s popular summer camp, where volunteers all come from the professional community (from geneticists to teachers of vision impaired children), allows professionals to learn directly from young people and hear about their experiences and priorities. By the end of the week these volunteers have a more intuitive sense of the challenges that are faced, and that then helps drive improvements to their own practice, as well as improvements to services across their professional networks.
The lifeline of Resilience Funding
The Resilience Funding from Fight for Sight / Vision Foundation will ensure Usher Kids UK can continue to support the families they work with, while branching out to reach more people. “The demand that we have for our services is unrelenting. And up until now, we’ve been volunteer run.” says Chloe. Estimates suggest there are currently 2,000 children and young people (aged 0-25yrs) living with the condition in the country right now and the charity is currently in touch with between 300 and 400 families. “Being able to secure paid staff means we can make our services available to every family receiving this diagnosis, and be there for the whole journey.”
The ultimate positive feedback
In closing, Chloe reflects on the experience of one child who attended an Usher Kids UK summer camp that typifies the kind of connection the charity enable:
“We work with so many young people but there’s one that springs to mind, a teenager, who was struggling on lots of fronts. He was at our summer camp last year and they were in the water. For kids who are deaf, being in a swimming pool with hearing peers can be isolating because their hearing devices are usually off. They often opt out of those kinds of activities, so we take them into the water purposefully for a day, because they’re going to be amongst peers that understand.
And this lad just kept going around tapping everyone on the shoulder saying, “Can you hear me?” And they’d be like, “no, I can’t hear you,” but they could lip read. And his chest, honestly, with every single person he asked, his chest rose, and his shoulders dropped, and the physical relief was just washing over him, of knowing, ‘I’m around people that totally understand what this is like’.
So by the end of that day, all the volunteers were sitting on the jetty, just swinging their legs and watching these kids have an absolute blast. And every single one of them had tears streaming down their faces watching this lad, and all the other kids and young people transform, as a result of having the chance to connect with others on a similar journey to them.”
Further reading:
Find out more about Usher Kids UK >
Read about more life-changing services we’re helping to fund >
Listen to our Eye Research Matters podcast with Stephen White from CUREUsher >
