A cut above the rest

A Glossop business owner has brought the community together for a special charity fundraiser, to help two local children create lasting memories before they gradually lose their sight.

Debbie Clarke, owner of DC HairDesign, hosted a Charity Haircut Day on Friday 8th May, with all donations going towards helping siblings Emmeline (8) and Abel (2) fulfil their “sight bucket list” dreams, after both were diagnosed with the rare condition Usher Syndrome.

The event ran from 10:30am to 6pm at Debbie’s salon at The Hayloft on Howard Street, with haircuts offered in exchange for donations alongside a selection of homemade cakes for sale.

Debbie said she felt compelled to act after learning about the family’s situation from the children’s mum, Beth Edgar.

“She told me her children have Usher Syndrome, a condition that affects both hearing and vision and, over time, can lead to complete sight loss.

“As a parent, I couldn’t stop thinking about what that must feel like - knowing your children will one day lose the ability to see the world around them. It really hit me. No child should miss out on life’s beauty without the chance to truly experience it.”

Usher Syndrome is a rare genetic condition that affects both hearing and vision. Emme and Abel were born deaf and received hearing aids at just 10 weeks old. While the family adapted to life with hearing loss, further testing later revealed that Emme has Usher Syndrome Type 2, meaning she will gradually lose her sight due to Retinitis Pigmentosa.

Beth, mum to Emmeline, Margot, Delilah and Abel, said the diagnosis changed everything.

“Being a first-time mum and finding out my little ones were deaf was a shock, but we adapted to support Emme and then Abel as best we could - they are incredible. Nothing holds them back” she said.

“In December, Emme’s genetic blood tests showed that she has Usher Syndrome Type 2. When we left the appointment room, she asked me, ‘Does that mean I’m going to go blind?’ That’s not how I would have wanted her to learn about her diagnosis, but it opened up conversations and gave her an awareness of what the future may hold.”

Beth admitted the diagnosis “hit hard”, particularly with the uncertainty surrounding how quickly sight loss may progress.

“There are incredible support networks out there, but the unknowns of when and how fast left me reeling” she said.

Abel is also expected to receive the same diagnosis following recent genetic testing, but rather than allowing fear to define the future, the family made a conscious decision to focus on making memories together.

“We decided to create something special with Emme that we will also create with Abel as he gets older - a Sight Bucket List” Beth said. “It’s a list of all the things they want to see and experience to create lifelong memories.”

Emme is described as a football-loving, funny, kind-hearted girl. Her wishes include learning to ski, seeing a volcano, visiting Norway to see the snow, witnessing the glowing sea created by bioluminescent algae, and becoming a mascot for the Lionesses so she can meet England goalkeeper Hannah Hampton.

Debbie quickly got a group together and they started to take action.

“We created a GoFundMe campaign to help raise money, with the goal of giving them the chance to have as many incredible experiences as possible while they still can” she said. “It’s about building a lifetime of memories before their vision fades.”

Alongside the haircut fundraiser, friends and relatives are planning sponsored events, including a climb up Snowdon, a Hyrox fitness challenge and the Manchester Half Marathon. They will raise money for the family and the charity Cure Usher, and also raise awareness about the syndrome.

“This isn’t just about fundraising” Debbie said. “It’s about giving hope, creating joy and showing a family that they are not alone.”

Beth admitted: “Asking for help doesn’t come naturally to me, but I realised this could help my children experience things I could never give them alone and also raise awareness of Usher Syndrome for other families.”

She added: “Anything people can give, my little ones will appreciate so much. Even if people can’t donate, simply sharing awareness means the world to us.”

To donate visit: https://www.gofundme.com/f/help-emmeline-and-abel-see-their-dreams?