General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Joshuas Story

“One more day of playing as his brother’s closest friend. One more day with family. One more ‘let’s pretend.’”

Ali Glover shares with us her poem ‘One Day More,’ which she has written for her 8 year old son Joshua who has Batten disease CLN6.

One day more

Dear God, today I ask one thing.
Just one and nothing more.
I ask you for just one more day as a family of four.

One more day of laughter,
One more day of tears.
If every day I ask this, will it elongate the years?

One more day of tantrums,
One more day of joy.
One more day of mischief with my beautiful baby boy.

One more day of hearing ‘mummy’ at my door.
One day of frustration, oh please, just one day more.

One more day of playing as his brother’s closest friend.
One more day with family.
One more ‘let’s pretend.’

I know there’ll come a day when I can’t ask this anymore.
When you’ll call him safely home again and fling wide heaven’s doors.

But that day isn’t here yet,
That day hasn’t come.
So now I ask for one more day,
Nothing else

Just one.

For Joshua xx

Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease