A BRADFORD teenager has just released her own tribute single in memory of her two little cousins who died of one of the UK’s rarest childhood diseases, in the hope that it will spread awareness of the condition.
Poppy Brownnutt, 15, wrote When You Were With Me for her cousins Ellie Mae and Caleb Brownnutt, both of whom died of Batten disease.
The record was released on June 6 ahead of International Batten Disease Awareness Day today (June 9).
Batten disease is a rare and terminal neurodegenerative disease that 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.
READ MORE: Brave Holly loses fight against Batten Disease
There is only one treatment, suitable for patients with one type of the disease, which slows down the progression of the disease but does not cure it.
“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.”
Poppy's mother Liz, who now works for the BDFA, is hoping the single is a success so cures for this terrible disease can be finally found.
“We need more awareness of Batten disease among the general public as well as the medical profession.
READ MORE: Bradford couple's heartbreak as son is struck by Batten Disease
“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.”
When You Were With Me was recorded and produced by Newcastle-based record store owner David McGovern and released on his record label, Beyond Records.
The single, which arranged by Paul Fairbairn, is available digitally and on limited edition CD.
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