Dad of two Leeds children who died from Batten disease "blown away" by awareness single written by cousin

A dad who tragically lost his two children to Batten disease has been "blown away" by a charity single written by their cousin in their honour - to mark an awareness day for the ultra-rare condition.

By Daniel Sheridan
Saturday, 28th May 2022, 4:45 am

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Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

They sadly died aged just six-years-old and nine-years-old in 2015 and 2019 respectively.

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Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

Now, 15-year-old Poppy Brownnutt from Baildon is releasing her own tribute single in memory of her two little cousins titled ‘When you were with me’.

The single, which was arranged by Paul Fairbairn, recorded and produced by Newcastle based record store owner David McGovern and released on his record label Beyond Records, will be released on June 6 ahead of International Batten Disease Awareness Day on June 9.

Duncan, 47, from Roundhay, said he was "blown away" by the song.

He told how Ellie Mae and Caleb "adored" Poppy and said he couldn't be more proud of the work she is doing to raise awareness of the condition.

Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

Duncan - who now works at Martin House Hospice in Leeds, where Ellie Mae and Caleb received "incredible" end of life care - said: "Poppy had such a great relationship with the kids, especially Caleb because of their ages.

"From what I have been told by her mum Liz, Poppy went into her room one day and when she came back out, told her she had written a song.

"Everyone has been blown away by it, honestly.

"It is such a lovely tribute to Ellie Mae and Caleb.

Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

"It will be brilliant to help with the awareness day."

Previous singles released by David McGovern have made it to the charts and Poppy's family is hoping hers will be a hit.

Speaking to the YEP, her mum Liz, 53, said: "What happened to our family has changed us.

"I am now head of fundraising for the BDFA (Batten Disease Family Association) and it is close to the hearts of everyone in our family.

Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

"Poppy called me upstairs one night to listen to the song and I reached out to David straight away.

"I am so proud of her.

"It was absolutely perfect."

Poppy, described as an "accomplished singer" by mum Liz, is now due to start a course at Leeds City College.

She recorded the song in Newcastle recently.

"Everyone is excited for it to be released", Liz said.

Duncan Brownnutt's children Ellie Mae and Caleb were diagnosed with Batten disease at a very early age - a rare and terminal neurodegenerative disease that affects fewer than 200 children and young people in the UK.

“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.”

Poppy said she wanted to write the song to "capture the memories" she has of her cousins.

“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)", she added.

"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.”

For Duncan, the song is particularly poignant.

He said it had been hard for the charity to continue to raise awareness of the condition due to the small amount of people it affects in the UK each year.

He hoped the single would resonate with people and start a discussion about Batten Disease.

Duncan has now taken up a role at Martin House Hospice in Leeds, where Ellie Mae and Caleb received end of life care.

He told the YEP he wanted to "give back" to the incredible hospice.

"I know for many parents in a similar position, it is somewhere they would never wish to return to", Duncan said.

"It was where I knew Ellie Mae and Caleb were happy.

"It helps me keep their memories alive."

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What is Batten disease?

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.

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.

The BDFA is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease.

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.