Thomas’ Story

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

4 years ago our beautiful boy - the one who made us parents left our world. This world was not kind to him, he fought a ...
18/03/2026

4 years ago our beautiful boy - the one who made us parents left our world. This world was not kind to him, he fought a brave battle against Batten Disease. On the 18th of March 2022, Thomas age 14 left for the light - to be free from Batten Disease.
We are always connected in all the love and memories we shared.
Your light always shines, even though we’re apart. Forever our son, forever in our hearts ❤️💙❤️✨✨

Happy 18th Birthday Thomas ❤️💙❤️🪽👼🏻🪽This is the 4th birthday we have celebrated without you here by our sides. We miss y...
04/03/2026

Happy 18th Birthday Thomas ❤️💙❤️🪽👼🏻🪽

This is the 4th birthday we have celebrated without you here by our sides.
We miss you every single day and even more than ever today.

We send our love to skies above,
Wrapped in memories and endless love.
Your light always shines, even though we’re apart,
Forever our son, forever in our hearts.

Have fun today in the light ###xx

28/02/2026

The UK currently screens for 9 rare diseases with new-born ‘blood spot’ screening tests. Our aim is to push for Batten disease to be included in the list of rare diseases tested for at birth. More than 20 European countries screen for more conditions than the UK, with most of them screening for more than 20 conditions whilst the US screens for up to 50.

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27/02/2026

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💜🩵💙🩷Rare disease day is this SATURDAY! 💜🩵💙🩷

Rare Disease Day is the global movement dedicated to raising awareness and generating change for the 300 million people living with a rare disease worldwide like Batten Disease 🧡 Support Rare disease day on the 28th February 2026!

Since 2008, the global rare disease community has come together on Rare Disease Day to share their colours and advocate for change.

We will be sharing some photos of our amazing Batten community on the day, celebrating them all, despite a rare diagnosis. Share your rare and don't for get to tag us!

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!

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03/07/2025

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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 🧡🧡🧡


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