General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
2. Poppy

“You asked where she was and it made me cry, I couldn’t tell you where your big sister had gone.”

15-year-old Poppy Brownnutt wrote the official 2022 BDFA Awareness Day song, a beautiful and moving tribute about losing her cousins, Ellie Mae and Caleb, to CLN2 Batten disease.

I wanted to write the song to capture the memories I have, which are very personal to me. I didn’t have any plans on sharing the song, but my Mum thought it was really powerful and precious so I am really glad that I did and that it has now become the BDFA’s official awareness day song. I hope that my song about Ellie Mae and Caleb helps to raise lots of awareness of Batten disease, so that one day a cure is found.

When you were with me

Verse 1:

12/12/2008 An angel entered this place
Perfect smile and an infectious laugh
We all wanted to take everything on your behalf
31/12/2014 You said my name which I adored
Don’t think I ever heard it after that
All I wanted was to make you laugh
And I need to be the one you can go to in life

Chorus:

It’s like a prison sentence without you here
Feels like I got more than 25 years
Locked up in my healthy cell
Whilst you were here living through hell
6 & 9 years of pain you endured
How I wish that it could all be cured
Few years too late for that helpful trial
It’s like you were born just to help our lives
And I know I can’t be there with you

Verse 2:

16/05/2010 The day you came to say hello
Miss P and Mr C
One day we’ll be together eternally
26/05/2015 You asked where she was and it made me cry
I couldn’t tell you where your big sister had gone
It broke my heart to know you missed her so
And I hope you know how much I cared

Chorus:

It’s like a prison sentence without you here
Feels like I got more than 25 years
Locked up in my healthy cell
Whilst you were here living through hell
6 & 9 years of pain you endured
How I wish that it could all be cured
Few years too late for that helpful trial
It’s like you were born just to help our lives
And I know I can’t be there with you

Bridge:

A kiss on the forehead, a touch of the hand
That’s what I did when you were last here
Feeding the ducks or watching TV
Nothing was boring when you were with me
Whether at church or at Grandma’s
All I wanted was to make you smile

Chorus:

It’s like a prison sentence without you here
Feels like I got more than 25 years
Locked up in my healthy cell
Whilst you were here living through hell
6 & 9 years of pain you endured
How I wish that it could all be cured
Few years too late for that helpful trial
It’s like you were born just to help our lives
And I know I can’t be there with you

REPEAT

Outro:

07/05/2015 15/11/2019
I feel guilty that I’m still sad that you’re both not by my side

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.