A BRADFORD teenager has re-released her own tribute single in memory of her two young cousins who died of one of the UK's rarest childhood diseases.
At the age of 15, Poppy Brownnutt wrote When You Were With Me to remember her relatives Ellie Mae and Caleb Brownnutt, both of whom sadly died of Batten disease.
The poignant tune was first released in 2022 as the Official Batten Disease Awareness Day song and reached number six in the UK Official Physical Singles Chart.
As Poppy continues to spread awareness of the condition, the single was re-released digitally earlier this month with two new bonus mixes.
Physical copies will be re-released from December 1 as the song will become the Batten Disease Family Association's (BDFA) official Christmas charity single for 2023.
Poppy, who was eight when Ellie Mae died aged six in 2015, and 13 when Caleb died aged nine four years later, 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 helps to continue to raise lots of awareness of Batten disease this Christmas, so that one day a cure is found."
Batten disease is a rare and terminal neurodegenerative disease which affects fewer than 200 children and young people in the UK.
Children are born healthy but then start having seizures, they lose the ability to speak, walk or see and they develop dementia.
Many die in early childhood, though some survive to early adulthood.
There is only one treatment, suitable for patients with one type of the condition, which slows down the progression of the disease but does not cure it.
"We need more awareness of Batten disease among the general public as well as the medical profession," said Poppy's mother Liz, who now works for the BDFA.
"At the BDFA we provide practical and emotional help for families who are affected by the disease, but we are also desperately in need of more treatments.
"We have to find cures for this devastating condition - and we need all the support people can offer us in order to reach that goal."
The song can be bought at https://beyondvinyl.co.uk/product/poppy-when-you-were-with-me-2023-cd-single/
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