Emily's Battle with Batten

12/11/2025

31/10/2025

Happy Halloween 🎃👻 🦇

Here's a throwback to some Halloween pictures of Emily from over the years 🧡

30/10/2025

I LOVE these pictures of Emily at Hull Fair over the years. But they also break my heart a little too.

Going to Hull Fair was always a bit of a tradition for us. I remember going as a kid and being so excited when it got to October as you knew it was nearly fair time. Then going with friends as a teenager and braving the bigger rides. Then having our own kids and getting to show them the fun of the fair.

Emily used to love the fair! She enjoyed the rides, the games and the sweets. We would go with family and friends and it was always a sort of event in the calendar.

Hull Fair came around as always this month and for the second year in a row Emily didn't want to go. It's too busy and loud for her and she doesn't enjoy the rides anymore.

I hate that Batten Disease has not only taken this away from Emily but taken the experience away from us as a family too. A tradition that I thought would go on until I was taking my grandkids and they'd be dragging me on rides that were way too big and too fast for me. Sometimes it's little things like this that makes me realise how much has really changed for us over the last few years. And in all honesty it sucks!

26/10/2025

Fundraising update 🧡

Back in July we shared with you the mammoth task that Craig Chadburn has kindly offered to take on to raise funds for Emily's Battle with Batten. He is cycling 4750 miles across Europe 😲🚴 You can follow his progress on tik tok by following raisewithcraig.
To make this even better Craig has spoken to HUUB Design about Emily's story and his challenge and they have offered a 40% discount code on their products with 10% of any purchase going towards Emily's funds.

The code to use for the discount is EMILY40-2025 and now is a great time to use the extra discount with the festive season around the corner.

https://huubdesign.com/

HUUB Design sells performance gear for triathlon, swimming, and cycling, including wetsuits, triathlon suits, and cycling apparel. They also offer a range of accessories such as goggles, swim caps, gloves, and bags. They are a premium endurance sport apparel brand with an ethos of continuous improvement in all its products. Focusing wholly on the athlete and maximising performance and comfort, HUUB explores both the odd and the conventional to create the best.

So if you or anyone you know are looking for any performance gear please use the code or feel free to share it on your socials.

Wetsuits, tri suits, cycle kit, swimwear and accessories with a focus on form, fit and performance by HUUB Design. Multiple 220 Triathlon and Cycling Plus Awards.

25/10/2025

Emily had a great time at The Deep this morning with Square Peg Hull and Sight Support HEY 😊 making a Jack Skellington and a penguin shaker

22/10/2025

Fundraising update 🧡

Back in July we shared with you the mammoth task that Craig Chadburn is taking on to raise funds for Emily's Battle with Batten. He is cycling 4750 miles across Europe 😲🚴 you can follow his progress on tik tok by following raisewithcraig.
To make this even better Craig has spoken to HUUB design about Emily's story and his challenge and they have been really generous and offered a 40% discount code on their products with 10% of any purchase going towards Emily's funds.

The code is EMILY40-2025 and now is a great time to use the extra discount with the festive season around the corner.

https://huubdesign.com/

HUUB is a premium endurance sport apparel brand with an ethos of continuous improvement in all its products. Focusing wholly on the athlete and maximising performance and comfort, HUUB explores both the odd and the conventional to create the best.

Wetsuits, tri suits, cycle kit, swimwear and accessories with a focus on form, fit and performance by HUUB Design. Multiple 220 Triathlon and Cycling Plus Awards.

17/10/2025

Emily's had a fantastic week at school this week.

She used to be a first aider at her primary school and enjoyed getting to practice CPR again.

She had another session in the school pool on Wednesday and is growing in confidence.

I received a lovely message from Roy Turnham this evening to say how hard Emily had worked in her session with him today, doing lots of moving and tracking and then non-stop showdown for an hour!

And she managed to get the award for Dojo Champion for earning the most dojo points in her class this week.

We're forever proud of her determination and how hard she works at school 🧡

13/10/2025

Could you join ?

We are so grateful for the fantastic fundraisers that have taken place throughout the year and for those in the pipeline. If you’re feeling inspired to get involved, we’d love to hear from you!

🏃We are entering a BDFA Team into the Cambridge Half Marathon on Sunday 8th March 2026. We currently have 3 places still available, please get in touch on fundraising@bdfa-uk.org.uk if you’re interested to find out more.

🪂 We’re delighted to be a Go Skydive charity partner so if parachuting has always been a goal of yours, this could be the perfect opportunity to make that dream a reality! Visit the Go Skydive website to find out more here: https://www.goskydive.com/charity/batten-disease-family-association-cio/

🏃We are always open to purchasing places in organised events and love to take suggestions from our wonderful community. If you’ve had your eye on an event for next year and would like to explore the possibility of getting a BDFA team together, get in touch!

🧁If your school, workplace or community group would like to fundraise but are short of ideas, reach out to us on fundraising@bdfa-uk.org.uk and we’d be more than happy to assist.

We deeply appreciate all your support and look forward to exploring future fundraising opportunities!🧡

02/10/2025

Happy birthday to Emily and Lewis' wonderful dad🎉🎊🥳 we can't thank him enough for everything he does for us all. We wouldn't be able to do it all without him. He really is the best dad and deserves the most special day. We love you 🧡