This is our beautiful 13 year old daughter, Emily. On 20th January 2022 we were given the devastating news that she has a life-limiting condition called Batten Disease. Batten Disease is a rare neurodegenerative disorder that causes blindness; epilepsy; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Unfortunately there is no cure for Batten Disease and children suffering from this condition don't often live longer than their teens.

Emily's sight has now completely gone and her speech and balance are both effected too. She also had her first tonic clinic seizure on Boxing Day 2023. Unfortunately things progress quickly with this disease and we are now in a position where we need to make changes to our home in order to keep it safe for Emily.

Unfortunately last year Emily took a tumble down the stairs at home. Luckily she managed to catch hold of the bannister and stop herself from falling all the way down. She had a couple of nasty bruises but it could have been so much worse. This has really highlighted that we need to get her bedroom moved downstairs sooner rather than later. So we are raising money towards getting our garage converted into a bedroom with an attached wet room for her.

We will be organising lots of fundraising activities so if you'd like to get involved please contact us. Or if you have any ideas for fundraisers please do let us know.

Thank you for taking the time to read about our beautiful Emily.

Becky and Ricky Atkin x