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Batten Fighters Forever 💙

@batten_fighters_forever

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Today, Andy and I joined other bereaved parents at a weekend hosted by the Batten Disease Family Association, a time to remember our precious children and share in their memory.

During today’s memorial service, the names of children who have died from Batten disease were read aloud, including our own beautiful Annabelle. Hearing her name was deeply emotional, and it meant so much to have her remembered alongside so many other dearly loved children.

Parents were invited to hang a star in their child’s memory and decorate a candle. Each one a tribute to a precious life, a love that never ends, and a child who will always be part of their family.

We also heard the heartbreaking news today that another little boy has gained his wings and is now free from this cruel disease. We are holding him and his family in our thoughts and sending them so much love.

Thank you to the BDFA for bringing families together and creating space for our children to be remembered.
Forever loved. Forever missed. Never forgotten.

#BattenFightersForever #BattenDisease #ForeverInOurHearts by @batten_fighters_forever

💜 Introducing our Sassiest Walker 2026 — Ellie! 💜
A huge congratulations to the fabulous Ellie, who completed the full 21km Sassy Walk Challenge Route in true Sassy style!

Ellie brought determination, energy and plenty of colour to the day, and we are so proud of her for taking on such an incredible challenge. Completing 21km is an amazing achievement and being crowned our Sassiest Walker makes it even more special. 👑💜

The Sassy Walk was a truly wonderful event, filled with support, laughter, purple, friendship and an incredible sense of community. Every walker, volunteer, sponsor and supporter helped make the day so memorable while raising awareness of Batten disease.

It is not too late to support our amazing walkers and the families who benefit from the funds raised. Every donation, however small, helps make a real difference.

Please donate via the Sassy Walk fundraising page:
www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page

Well done, Ellie — you truly are the Sassiest Walker! 💜

#SassiestWalker #SassyWalk2026 #TeamSassy #BattenFightersForever #BattenDiseaseAwareness 21kmChallenge EveryStepMakesADifference DonateNow by @batten_fighters_forever

Today would have been our beautiful Annabelle’s 21st birthday - her heavenly 21st. 💜

There is no easy way to put into words how much we miss her. We think of her every day: her courage, her determination, her sparkle and the incredible legacy she continues to leave behind.

Annabelle named our charity Batten Fighters Forever ,BFF, because she wanted to raise awareness of Batten disease and help other families facing the same challenges.

We know she would have been so proud of every single person who took part in this year’s Sassy Walk. Proud of the walkers who took on the challenge, the volunteers who gave their time, the businesses and sponsors who supported us, and every person who donated, shared a post or cheered from the sidelines.

The Sassy Walk was filled with love, laughter, determination and the community spirit Annabelle inspired in so many people. Every step taken was for her, for Robbie and for all families affected by Batten disease.

Happy heavenly 21st birthday, our darling Sassy. We hope you know how loved you are, how missed you are, and how proud we are to carry on your legacy.
Forever our girl. Forever fighting. 💜

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page

#HappyHeavenlyBirthdayAnnabelle #Forever21 #SassyWalk2026 #BattenFightersForever #TeamSassy BattenDiseaseAwareness AnnabellesLegacy by @batten_fighters_forever

Our first walkers accross the finish line

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page by @batten_fighters_forever

💜 Siblings walk their own journey too. 💜
When a child has Batten disease or additional needs, the impact is felt by the whole family, including brothers and sisters.

Siblings can grow up with extra worries, responsibility, appointments, changes to family plans and emotions that other children may not always understand. They often show incredible patience, compassion and strength, while quietly carrying their own feelings too.

Young siblings of disabled children can have more worries and responsibilities than their peers, which is why their experiences deserve recognition and support.

Today, we are so incredibly proud of our Georgie.

Georgie has always been an amazing sister to both Annabelle and Robbie. She loved Annabelle fiercely, and she continues to be a wonderful, caring and encouraging big sister to Robbie.
In this video, Georgie is leading the Challenge Route, showing the same determination, kindness and strength that makes us proud every single day.

She is walking for her sister, for her brother and for every family affected by Batten disease.

We are so proud of you, Georgie. 💜

Please show Georgie some love in the comments and, if you can, sponsor her and all our incredible walkers.
Every donation helps Batten Fighters Forever provide practical support to families living with Batten disease.

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page

#TeamSassy #ProudSister #SiblingsMatter #BattenFightersForever #BattenDiseaseAwareness SassyWalk2026 EveryStepMakesADifference by @batten_fighters_forever

Our equally fabulous support team are waiting at Corfe for the challenge walkers.

Thank you @greg_selby38 & Victor

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page by @batten_fighters_forever

A shout out to our support team number 1.

Our check points this year are remote and these two are having to carry water and snacks to the locations.

Thank you @andyhover74 & @ollybatt - you are smashing it

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page by @batten_fighters_forever

Our amazing photographer for the day @rachel_cooper_captures from @ember_and_light_photography enjoying the sun out on the route 💜 by @batten_fighters_forever

💜It’s Sassy Walk Day!💜

Our incredible Sassy Walkers are ready to take on their challenge routes in memory of Sassy, raising awareness of Batten disease and vital funds for Batten Fighters Forever.

Today is about so much more than the miles. It is about coming together as a community, and helping families affected by Batten disease access practical support when they need it most.

Please send our walkers lots of encouragement, and if you are able to, give them a sponsorship boost before they set off.

Every donation, whatever the amount, helps us continue supporting families through grants for vital equipment, technology, mobility aids, seizure monitors and home adaptations.
Donate here:

www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page

Thank you for walking with us in spirit and for being part of Team Sassy. Let’s make every step count! 💜

#SassyWalk2026 #ItsToday #TeamSassy #BattenFightersForever #BattenDiseaseAwareness CharityWalk EveryStepMakesADifference by @batten_fighters_forever

💜 The night before the Sassy Walk is finally here. 💜

Tomorrow, our incredible Sassy Walkers will take on their challenge routes to raise awareness of Batten disease and vital funds for Batten Fighters Forever.

This short video explains a little more about what Batten Fighters Forever does and why the support raised through events like the Sassy Walk matters so much.
We provide grants that can help families with practical support, personal care, essential equipment and home adaptations, helping to make everyday life a little easier for children and families affected by Batten disease.

To every one of our walkers: we hope you have a good night’s sleep, wake up feeling ready and know how proud we are of you. Thank you for giving your time, energy and determination to walk for Sassy and for families living with Batten disease.

There is still time to support them. If you can donate, whether it is £2, £5, £10 or any amount, please use this fundraising link www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page.

Every donation adds up and helps us continue providing meaningful support where it is needed most.
Please also share this post to help us reach even more people before tomorrow.

Good luck, Team Sassy. We cannot wait to walk beside you. 💜

#SassyWalk2026 #TeamSassy #BattenFightersForever #BattenDiseaseAwareness #CharityWalk EveryStepMakesADifference DonateNow by @batten_fighters_forever

💜 A little look back at last year’s Sassy Walk! 💜

One of the things we loved most was seeing so many of our wonderful walkers embrace the spirit of the day by dressing up, adding colour, fun and plenty of Sassy sparkle to the route.

From tutus and bright outfits to brilliant accessories, everyone helped make the walk such a joyful celebration of Sassy’s life, while raising awareness of Batten disease and vital funds for Batten Fighters Forever.

With the Sassy Walk nearly here, we cannot wait to see what outfits, costumes and purple sparkle you bring along this year! Whether you go all-out, wear a tutu, add something purple or simply put on your Sassy Walk T-shirt, we would love everyone to join in and make the day extra special.

Most importantly, please help us give our walkers one final fundraising boost. Every step they take is for families affected by Batten disease, and every donation can make a real difference.

Please sponsor a walker via this link https://www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page. Even a small donation will help us continue providing practical support to families who need it most.

We cannot wait to see you all on Saturday! 💜

#SassyWalk2026 #TeamSassy #DressUpForSassy #BattenFightersForever #BattenDiseaseAwareness #CharityWalk #EveryStepMakesADifference #DonateNow by @batten_fighters_forever

💜 Sassy Walk route recce complete!

With less than a week to go until the Sassy Walk, we have been out checking the routes, and we are pleased to say that everything is looking good.

It was lovely to spend time with our corporate sponsor and on the paths our amazing walkers will soon be taking on, making sure we are as prepared as possible for the big day.

Every mile is a reminder of why we are doing this: raise awareness of Batten disease and to generate vital funds to support families affected by it.

Batten Fighters Forever supports people and families affected by Batten disease through awareness, information and practical grants.

Our walkers are ready, their T-shirts and numbers are prepared, and the finish line medals are waiting. Now we need one final push from our wonderful supporters.

Please sponsor a Sassy Walker using this link https://www.peoplesfundraising.com/fundraising/bff-sassy-walk-2026-general-donation-page

Every donation, whether it is £2, £5, £10 or more - helps us make a real difference to families living with Batten disease.

We cannot wait to welcome everyone on Saturday 26 September. Thank you for being part of Team Sassy. 💜
#SassyWalk2026 #TeamSassy #BattenFightersForever BattenDiseaseAwareness CharityWalk EveryStepMakesADifference by @batten_fighters_forever