Hello, my name is Beth and I'm a mum to 4 little ones. Emmeline, Margot, Delilah and Abel.

Emme and Abel were both born deaf. They both received hearing aids at just 10 weeks old. Being a first time mum and finding out my little ones were deaf was a bit of a shock, as we have no family history, but we adapted to support Emme and then Abel as best we could and they are incredible, nothing holds them back.

In December 2025 Emme's aetiology results (the tests they offer on children with sensoineural hearing loss) came back. Her genetic blood tests showed that she has Ushers syndrome type 2. This is a rare condition that means she will gradually lose her sight. Retinitis Pigmentosa is what causes this in people with Ushers.

Emme was at the diagnosis as we weren't aware that it was more than a ENT appointment. When we left the room she asked if that means she's going to go blind. This is not how I would have liked her to have learned about her diagnosis but it has opened up some conversations for her and given her an awareness of what the future holds.

I'm not going to lie this did hit hard. There are incredible support networks to reach out to but the unknowns of when and how fast left me reeling. Usher Kids and Cure Usher have been incredible for me to reach out with any questions or for support.

Abel's genetic tests are due back in a few weeks. The consultant has said it is likely Ushers too due to his hearing loss. Both parents have to be carriers for children to have Ushers Syndrome. Myself and my husband were not aware we were carriers.

After speaking to family and processing the changes to come we decided to create something special with Emme that we will also create with Abel as he gets older...a Sight Bucket List.

A List of all the things they want to see and experience to create lifelong memories.

Friends and family have wanted to help support and donate with different events to raise money to help us towards these dreams.

My lovely hairdresser/gym coach Debbie is hosting a charity haircut day with cuts for donations. We're also hoping to climb Snowdon together in the summer with a weighted vest the same weight as Emme up to the tippity top! My wonderful sister is competing in a Hyrox event and my lovely cousin is running the Manchester half marathon to raise money for Cure Usher!

Asking for help is not something that comes natural to me and its taken me a while and lots of conversations to set up this page. After a long chat with my sister the realisation that it will help to raise awareness for Ushers Syndrome and help my children have experiences it would be impossible for me to give them without support encouraged me to do it.

I know how hard things are for everyone at the minute and would never expect anything. Anything people can give, my little ones will appreciate so much and will be so grateful.

Any one who can't thank you so much for taking the time to read this. Even if you can share Cure Usher to help raise awareness for others me and my family would be so grateful.

All donations will go towards helping Emme and Abel experience their bucket lists dreams.

Your support will help turn moments into memories that will last a lifetime.

My hope is to share their experiences and these special moments on here to see where your support is going.