Pupil releases single for devastating childhood disease

Poppy, Year 11 has released her very own tribute single in memory of her two cousins, Ellie Mae and Caleb, who died of Batten Disease and to help raise awareness of one of the UK’s rarest childhood diseases.

The single, ‘When you were with me’ written and sung by Poppy was released on 6 June ahead of Batten Disease Awareness Day and is currently number 15 in the Official Physical Singles Chart and it’s still climbing!

“I wanted to write the song to capture the memories I have, which are very personal to me,” explains Poppy, who was eight when Ellie Mae died aged six in 2015, and 13 when Caleb died aged nine four years later.

“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 official awareness day song for the Batten Disease Family Association (BDFA). 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.”

If you would like to buy the limited edition CD then it can be purchased here, or alternatively, the single can be downloaded from all major digital platfroms here. All proceeds go to the BDFA national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease. Their mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until a cure is found. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.