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Poppy’s Story & Official 2022 BDFA Awareness Day Song

“You asked where she was and it made me cry, I couldn’t tell you where your big sister had gone.” 15-year-old Poppy Brownnutt wrote the official 2022 BDFA Awareness Day song, a beautiful and moving tribute about losing her cousins,…

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James And Annabel’s Story

“The love that Annabel gives is beyond that of most 13-year-old children, I cherish those moments, I hug her just that little bit tighter.” James Yarrow is dad to Annabel, 13, who has CLN3 Batten disease. James talks about the…

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Mimi’s Story

“We know that hope is so important” Mimi Petty writes about Bertie, her son who passed away from CLN1 Batten disease at the age of four. Mimi writes movingly about the devastation of a diagnosis of disease with “no treatment…

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