On 20th January 2022 our hearts were broken when we received the devastating news that our beautiful 10 year old daughter Emily 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. In 2020 Emily started to lose her vision and is now severely visually impaired and on the blind register. Her sight continues to deteriorate and we don't know how much longer she will be able to see for. This has been tough for Emily but not once has she complained and she still tries to give as many things a go as she can. Her speech is now regressing too, which can be frustrating for her as she has so much she wants to say but really struggles to get her words out clearly. Emily is the kindest, sweetest, most gentle and loving girl that you could ever meet. She does not have a bad bone in her body and her happy nature can't help but make you smile. She loves to talk (we literally can't stop her sometimes) and she keeps us laughing every day. Her strength and resilience the last few years make us beyond proud, she doesn't let this disease get her down and always has a smile on her face. Emily has a lovely relationship with her big brother Lewis and I'm devastated too, for him, that he will have to watch his little sister get so poorly. Neither of them deserve for this to be their childhood. Another thing you should know about Emily is that she LOVES Harry Potter! I'd even go as far as saying she is obsessed! She often tells us to call her Harry and not Emily and spends most of her time at home in her Gryffindor robes whizzing around on her broomstick. When we left the hospital in January we were told to go away and make as many memories as we can with Emily. So that is what we plan on doing. Unfortunately this disease can progress quickly so we don't know how much time Emily has to be able to have new experiences and create those memories. Our aim is to raise some money in order to be able to do as many things as we can with her from her bucket list. We would love to take her for a meal at the Leaky Cauldron and wand shopping at Ollivanders, to see The Cursed Child on the West End in London, or on a holiday where she can spend carefree hours splashing in the pool. We know these things won't all be doable but Emily deserves the world and more and we will try our hardest to give her the best life possible. We will be organising lots of fundraising activities so if you'd like to get involved please contact us.
