Thomas’ Story

25/07/2026

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03/07/2026

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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!

08/06/2026

Thomas’Batten Disease story 🧡🧡🧡

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 ❤️💙❤️✨✨

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.

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!

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.