Emily's Battle with Batten

Emily's Battle with Batten On 20th January 2022 we received the devastating news that our beautiful 10 year old daughter Emily has a life-limiting condition called Batten Disease.

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.

We just wanted to say thank you for all of the kind messages and comments we received after Emily's hospital appointment...
17/04/2026

We just wanted to say thank you for all of the kind messages and comments we received after Emily's hospital appointment on Monday.

Behavioural issues are not something we have experienced with Emily as of yet and I think it came as a bit of a shock, especially as she sees the same doctor and has the same tests done on a regular basis.

We've received some helpful information from the Batten Disease Family Association regarding anxiety and we feel more prepared if it happens again in the future.

She's had a lovely week back at school and has been back to her happy smiley self.

Thank you again to everyone for their support it really does mean the world 🧡

Tough day todayToday Emily had her regular check up with her paediatrician. She was in good spirits on the way and while...
13/04/2026

Tough day today

Today Emily had her regular check up with her paediatrician. She was in good spirits on the way and while in the waiting room. However when the doctor wanted to check her over Emily completely shut down. She wouldn't get on the bed, she wouldn't let the doctor check for any tightening of her muscles and she wouldn't let her check her reflexes. No amount of coaxing or reassurance would bring her round so unfortunately these things couldn't be checked. By this point Emily was done and we couldn't even get her to answer any of the doctors questions.

Then the tears came. Trying to get Emily to open up about her feelings is near on impossible so trying to understand why she is feeling the way she does or being able to help her is extremely difficult. She was so overwhelmed and just wanted to go home. A referral has been made to a psychologist so we can discuss ways to manage these types of behaviours and help Emily to open up and understand her feelings.

These tests are so important so we can track any deterioration and adjust Emily's physiotherapy if necessary. So it was a frustrating day all round.

Emily has been seeing the same doctor, at the same hospital and doing these exact same tests regularly since she was diagnosed over 4 years ago so we're not sure what happened today. We're hoping Emily was just tired after a busy Easter break but Batten disease does cause behavioural changes so this is something to keep an eye on for us.

06/04/2026

We have 3 tickets to tonight's Hull City game if anyone can make use of them?

Happy Easter everyone 🧡
05/04/2026

Happy Easter everyone 🧡

Just a little girl and her best friend 🧡Guide Dogs UK
02/04/2026

Just a little girl and her best friend 🧡

Guide Dogs UK

29/03/2026

Here is a list of the winning horses from our Family Race Day sponsored by Vision Through Action CIC

Race 1 sponsored by White Rose Coaching - CRINKLESBUDDY owned by Rebecca Bolton

Race 2 sponsored by Rainbow Dreams Reiki -
FATDAD owned by Tina Bean

Race 3 sponsored by Cottingham Nature Play Childminding & Forest School -
WILLDO owned by Will

Race 4 sponsored by Simply Sport Memorabilia -
DIAMOND owned by Tina Bean

Race 5 sponsored by Rebound Therapy Hull -
JIGGYHUNTER owned by Paul Hunter

Race 6 sponsored by Leila Ives Mortgage and Protection Services -
JAMIESMAGICTOUCH owned by Julie Williams

Race 7 sponsored by Hull Cheerleading Academy -
LEGEND owned by George Brown

Race 8 sponsored by Hedon Mobility -
BUCKAROO owned by Katie McAulay

Congratulations to all of the winners and thank you again for all of your support 🧡

What a fantastic day we had yesterday! Because of all of you we managed to raise a fantastic £848 🧡Thank you so so much ...
29/03/2026

What a fantastic day we had yesterday! Because of all of you we managed to raise a fantastic £848 🧡

Thank you so so much to everyone who came and supported us, it was a lovely afternoon.

Thank you to King William IV - Cottingham for allowing us to host our event in their lovely back room for free.

Thank you to our amazing event sponsor Vision Through Action CIC and our wonderful race sponsors Rebound Therapy Hull Simply Sport Memorabilia Hedon Mobility Leila Ives Mortgage and Protection Services Hull Cheerleading Academy Rainbow Dreams Reiki White Rose Coaching Cottingham Nature Play Childminding & Forest School

Thank you to everyone who purchased horses. A list of the winners will be posted later today.

We cannot tell you how much we appreciate the support that we get, it really does mean the world to our family 🧡

Just a reminder that tomorrow afternoon is our Family Race Day starting at 2pm at King William IV - Cottingham Tickets ...
27/03/2026

Just a reminder that tomorrow afternoon is our Family Race Day starting at 2pm at King William IV - Cottingham

Tickets are £5 for adults and kids are free. As well as the racing there will also be a tombola and raffle. Please bring cash (there are 2 cash machines in the village if needed). And of course the bar will be open.

There is free parking in the co-op car park which is next to the venue.

A huge thank you to our fantastic sponsors this year:
Vision Through Action CIC
White Rose Coaching
Rebound Therapy Hull
Simply Sport Memorabilia
Cottingham Nature Play Childminding & Forest School
Rainbow Dreams Reiki
Leila Ives Mortgage and Protection Services
Hull Cheerleading Academy
Hedon Mobility

And thank you to everyone who has donated raffle and tombola prizes.

We couldn't do this without all of your support.

We can't wait to see lots of you there tomorrow, it's going to be a great day 🧡

https://www.ticketsource.com/Emilys-Battle-with-Batten/t-oejdjgv

Just one horse left for sale. Who wants it??
24/03/2026

Just one horse left for sale. Who wants it??

Who would like to be in with a chance of winning some money at our Family Race Day?

For just £5 you could be the proud owner of a horse at our Charity Race Day. The owner of the winning horse from each race will win £15. With 8 races on the day that's £120 up for grabs.

You don't have to be attending on the day to own a horse, winnings will be put aside and can be transferred to the winning owners after the event.

We have 64 horses needing owners, so if you'd like to own any please pop your name below along with the number of the horse/horses you'd like to buy. Don't forget to think of a name for your horse too.

Race one - sponsored by White Rose Coaching
1. Will
2. Louise Dunham
3. Tina Bean
4. Annabel
5. Rebecca Bolton
6. Meika
7. Rebecca Bolton
8. Sandra

Race two - sponsored by Rainbow Dreams Reiki
9. Maureen Bramall
10. Wayne Johnson
11. Sandra
12. Julie Williams
13. Claire
14. Claire
15. Tina Bean
16. Joanne Gibson

Race three - sponsored by Cottingham Nature Play Childminding & Forest School
17. Will
18. Paddy Thompson
19. Kath Thompson
20. Tina Bean
21. Sue
22. Joanne P
23. Anton Shepherd
24. Joanne Gibson

Race four - sponsored by Simply Sport Memorabilia
25. Neil
26. Maureen Bramall
27. Meika
28. Julie Williams
29. Dionne Gibson
30. Paul Hunter
31. James Bishton
32. Tina bean

Race five - sponsored by Rebound Therapy Hull
33. Katie Wood
34. Sandra
35. Paul Hunter
36. Katie McAulay
37. Anton Shepherd
38. Sandra
39. Tina Bean
40. Julie Williams

Race six - sponsored by Leila Ives Mortgage and Protection Services
41. Bradley Wraith
42. George Brown
43. Julie Williams
44. Sam Stead
45. Tina Bean
46. Paddy Thompson
47. Tina Bean
48. Ian Mackenzie

Race seven - sponsored by Hull Cheerleading Academy
49. Jacky Hunter
50. Dave Ward
51. Bradley Wraith
52. Kath Thompson
53. Ian Mackenzie
54. Julie Williams
55. Tina Bean
56. George Brown

Race eight - sponsored by Hedon Mobility
57. Sam Stead
58. Katie McAulay
59. Katie McAulay
60. Julie Williams
61. Debbie
62. Katie Wood
63. Tina Bean
64. Jacky Hunter

Thank you so so much to Simply Sport Memorabilia for kindly offering to donate 25% of the sale of these items to Emily's...
22/03/2026

Thank you so so much to Simply Sport Memorabilia for kindly offering to donate 25% of the sale of these items to Emily's fund.

They are also one of our race sponsors for this year's Family Race Day.

Please check out their page and the many items they have up for sale.

Address

Cottingham
Cottingham
HU164

Website

Alerts

Be the first to know and let us send you an email when Emily's Battle with Batten posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category