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Meet Sam And Alice Who Both Have A Diagnosis Of CLN3

Meet Sam and Alice who both have a diagnosis of CLN3. Mum Natalie shares her moving experience of diagnosis.The BDFA would like to thank all of the families for being so courageous in sharing their thoughts and feelings in our…

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A Poem By Samuel

Hayley is mum to Addy who has CLN2 and her big brother Samuel, she tells us how his poem came to be This poem came out of Samuel and I chatting one evening and him asking "What do you think…

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Gabrielle, Mum To Kadiee Who Has CLN6

Next up is Gabrielle, mum to amazing Kadiee who has CLN6. Gabrielle shares her powerful words about her daughter to raise awareness today. #battenday2023

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Gail’s Story

''We found the strength from somewhere to keep going and we are very proud of what we have achieved from then until now'' Hi, I’m Gail, proud Mam to our precious sweethearts Louis Nicole and Jessica and together with my…

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Tammy Tells Us About Daughter Tia

The BDFA supports families at every stage of the Batten journey, including our bereaved community. This is the beautiful Tia, her mum Tammy and dad Lewis share their thoughts about her. We are sending love to all families who have…

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Debbie Tells Us About Her Grandson Jordan

Batten disease effects all members of the family, in our next post on awareness day, Jordan's grandmother Debbie shares her thoughts about him. #battendiseasebattenday2023

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Ava Bella’s Story

'Her world had completely stopped and with that her spark and smile had faded. I was extremely worried. I reached out to the BDFA to ask for help.'' Mum Kirsty tells her story of her daughter Ava Bella's diagnosis of…

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Laura, Mum To Anna Who Has CLN3

One day to go till International Batten disease awareness day tomorrow! This year the BDFA will be sharing stories and quotes from those at the heart of our work, the families. Our community has come together again this year to…

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New Book Available ‘Max And Abby’ By Dr Ineka Whiteman

The BDFA are pleased to introduce a wonderful new book by Dr Ineka Whiteman in association with the Batten Disease Support & Research Association Australia. The book called 'Max and Abby' is told through the eyes of big sister Abby,…

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