How Usher Kids UK is bringing isolated families together

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 0-25 years 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:

“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 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.