A song written by a teenager in memory of her two little cousins who died of one of the UK’s rarest childhood diseases has been re-released to raise awareness of the condition.

When You Were With Me is written and performed by 15-year-old Poppy Brownnutt, whose young cousins Ellie Mae and Caleb Brownnutt both died of Batten Disease.  

Arranged by Paul Fairbairn and produced by David McGovern, who owns Beyond Vinyl in the John Marley Centre, in Newcastle, it has been released as the Batten Disease Family Association’s official Christmas charity single 2023.

The Northern Echo: Poppy and Ellie MaePoppy and Ellie Mae (Image: Contributor)Batten Disease is a rare and terminal neurodegenerative condition affecting fewer than 200 children and young people in the UK.

Children are born healthy but then start having seizures, lose the ability to speak, walk or see and develop dementia.

Many die in early childhood, though some survive to early adulthood.

Poppy, from Bradford, was eight when Ellie Mae died aged six in 2015, and 13 when Caleb died aged nine four years later.

The Northern Echo: Poppy with CalebPoppy with Caleb (Image: Contributor)She said: “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. I hope that my song about Ellie Mae and Caleb continues to raise lots of awareness of Batten disease this Christmas, so that one day a cure is found.”

The BDFA is the only patient organisation in the UK for families affected by the condition, providing practical and emotional support as well as supporting research into the different types of Batten Disease.

Recommended reading:

Get the latest news, sports, and entertainment delivered straight to your device with a subscription to The Northern Echo. Click here 

The Northern Echo: Ellie Mae with CalebEllie Mae with Caleb (Image: Contributor)David, a longstanding supporter of the Batten Disease Family Association who has previously released four singles to support the charity, said: “We decided to re-release When You Were Me as this year’s Christmas release because it's such a beautiful, passionate, moving song and to help raise awareness of Batten Disease.

“Christmas is about spending time with family, and friends but also for some brings up memories of loved ones that are no longer with us and this song sums this all up perfectly."

The single will be available digitally and on a limited edition CD, from Beyond Records.