“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