Thomas’ Story

Thomas’ Story In memory of Thomas Gascoyne who lost his battle with Batten Disease (cln6) on 18th March 2022 age 14 ❤️

This needs to change. The last thing you want to do when you have lost your child is look for a job!
30/01/2026

This needs to change.
The last thing you want to do when you have lost your child is look for a job!

One policy I am particularly intent on changing is the sudden switch-off of support when a child dies. Currently, Disability Living Allowance (DLA) ends on the day a child passes away. For many families, this is the very income that helped them survive during months or years of hospital life, travel costs, heating, food, and simply staying afloat while caring for a seriously ill child.

To remove that support immediately, with no compassionate transition period, is not right.

Grief does not follow an administrative timetable.
Parents do not stop needing support the moment their child dies.

I am pleased that Sir Stephen Timms, Minister for Social Security and Disability at Department for Work and Pensions (DWP) and is engaging with our proposals and that officials are actively exploring the legal and financial implications of introducing a bereavement run-on for children’s DLA.

This is about dignity, compassion, and recognising the reality families face at the worst moment of their lives. We look forward to further updates and to continuing the work to ensure families are not abandoned by the system when they need it most.

For my Batten & Bluebell wood friends 🧡💜 a fab competition
18/12/2025

For my Batten & Bluebell wood friends 🧡💜 a fab competition

🎄 Christmas Giveaway – WIN 3 nights at AbleStay London 🎄

This Christmas, we are giving away a midweek stay at AbleStay, London’s fully accessible holiday home. Prize value £1,065.

The stay can be taken in 2026, on any midweek dates, subject to availability.

About AbleStay:

🌟 Sleeps up to 6. Fully wheelchair accessible.
🌟 Ceiling hoist and two profiling beds.
🌟 Award winning accessible bathroom with hi/lo bath and level-access shower.
🌟 Specialist equipment including Geberit toilet, shower trolley and comfy chair.

How to enter:

1. Follow the AbleStay page.
2. Comment telling us why this stay would make a difference to you or someone you know.
3. Tag a friend who would appreciate hearing about AbleStay.
4. Share the post so others can enter.

Entries close: 23rd December at 6pm. You’ve got to be in it to win it ✨

Winner: One winner selected at random from the comments.
No purchase necessary. The prize is a three-night midweek stay and does not include travel. No cash alternative.

Eligibility:

This giveaway is intended for a household that includes someone with a physical disability who would benefit from an accessible stay.

For more info about AbleStay, visit our website www.ablestay.co.uk

Good luck 🤞🏻

Please support this fundraiser 🎄🎶🎵🎄
12/11/2025

Please support this fundraiser 🎄🎶🎵🎄

We are excited to share that two of our very talented school parents are organising a Christmas Concert to raise funds for our School Reflection Garden.

The concerts are on Tuesday 16th and Wednesday 17th December 2025 at 7.15pm at Dronfield Civic Hall and tickets are £10 each - details for how to book tickets are in the poster below.

We are incredibly grateful for their support and these would be the perfect events to get you in the festive spirit!

💙💞💙
03/07/2025

💙💞💙

Today is National Bereaved Parents Day and we need your help! 💜

We need to spread the word as far as we can to show bereaved families that they are not alone and their children will never be forgotten.

Please join us at 7pm to light a candle and remember all of the children who lost their lives too soon.

Post about the day on social media and make sure to tag us in your posts and use the hashtags

We thank you for all of your incredible, continued support. Let's make today even bigger than before!

02/07/2025

Tomorrow marks National Bereaved Parents Day. Take a moment to think of those in your life who are grieving the loss of a child or baby whether recently or a long time ago. Your awareness matters. We will be here, always. 💜💜

20/06/2025

Her Royal Highness The Princess of Wales has written a personal and heartfelt message as Children’s Hospice Week continues. Led by Together for Short Lives it is the only week of the year dedicated to raising awareness of children’s hospice services.

In it, The Princess of Wales says:
“No parent expects to hear that their child has a serious health condition that could shorten their life. Sadly, this is the reality faced by thousands of families across the country, leaving them heart-broken, fearful of the future and often desperately isolated.

“Being able to access the support of one of the UK’s 54 children’s hospices means they don’t have to face that future alone.”

Her Royal Highness is patron of two children’s hospices: East Anglia’s Children’s Hospices and Tŷ Hafan Children’s Hospice.

She invites you all to join her in celebrating the life-changing work children’s hospices do:

“This Children’s Hospice Week, I hope you will join me in celebrating the life-changing work they do and thanking them for the vital care they provide to children and families experiencing the most challenging times.”

Read her letter in full here: https://www.togetherforshortlives.org.uk/her-royal-highness-message-childrens-hospice-week

15/06/2025

We honour all grieving Father's on Father's Day.

Today can be an incredibly painful day for dads who have lost a child or baby. If you're a bereaved father, we see you, we acknowledge your pain, and we honour the love you continue to hold for your child.

Your fatherhood is not defined by presence, but by the everlasting bond you share. We're sending you strength and peace today.

Wishing you the gentlest of days.

From all at A Child of Mine

Today is International Batten Disease Awareness Day and this is Thomas’ story 🧡🧡🧡The bravest boy I know 🧡🧡🧡
09/06/2025

Today is International Batten Disease Awareness Day and this is Thomas’ story 🧡🧡🧡
The bravest boy I know 🧡🧡🧡


Next Monday is Batten Disease Awareness day 🧡
03/06/2025

Next Monday is Batten Disease Awareness day 🧡

🧡✨ONE WEEK TO GO!!✨🧡

Just seven days until this year’s International Batten Disease Awareness Day!

We can’t wait to see what you all have planned, spread awareness and celebrate the incredible people in our community together. Don’t forget to tag us so we can see how you are raising awareness and share it on our socials too!

Our Awareness Day Big Give Campaign will be live and doubling donations from 9am on the 9th! https://donate.biggive.org/campaign/a05WS000004zxaLYAQ

🧡🎗Let’s go BIG for Batten 2025!🎗🧡

9th June 2025 🧡🧡🧡
24/05/2025

9th June 2025 🧡🧡🧡

🔶SAVE THE DATE - International Batten Disease Awareness Day 2025🔶

International Batten Disease Awareness Day 2025 takes place on Monday 9th June. One month to go!🌟

This year, the BDFA are going BIG for BATTEN with our very own matched funding campaign on the Big Give platform.

This means donations made during our campaign will be doubled by our matched funding pot made up of our wonderful pledgers’ donations. More details to follow!

As always, we’re aiming to make this day bigger, better and more orange than ever, and we need your help!

We would love for you to get involved with your own BIG fundraiser, whether that’s a big bake sale, a big personal challenge or a big orange day at the office, there’s ideas for everyone🧁🏃🚴

We would love to hear from our Batten families, sharing your BIGGEST achievements, smiles and stories, or any other 'big' moments you'd like to share. Please send to Lisa on admin@bdfa-uk.org.uk 🧡

Feel free to reach out to Sarah on sarahchandler@bdfa-uk.org.uk for more ideas or materials. We look forward to sharing more about our campaign shortly and turning orange on 9th June.🍊🧡🧡

30/03/2025

This Mother's Day we're thinking of everyone who is missing their mother, mothers who are bereaved of a child, those who would have loved to be mothers, and all those who can't be with their mother today, for whatever reason.

For bereavement support, guidance and information, please visit our website: childbereavementuk.org

Address

Dronfield

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