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A Poem From Mum Alison For Her Son Joshua

For Awareness day this year, Alison wanted to share her poem about her son Joshua. Smile Last night I watched you sleeping and I wondered what you saw. Do you dream in colour? Are you running? Singing your favourite songs?…

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Aimee Talks About The Daily Struggle With Batten Disease

Aimee is mum of Issac who has CLN2, she tells us about the daily fight against Batten disease. 🧡 Together we WILL make a difference 🧡 #battenday2023#showusyourorange#battenawareness#bdfa#battendisease@bdsra @bdfabattendisease

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Harry’s Mum Cheryl

This is Harry! He has CLN3 Batten disease. His mum Cheryl shares about his diagnosis. #battendiseasebattenday2023

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Sophie’s Story

Our journey with Batten disease started 9 years ago when after months of trying to fathom why our daughter Isabel who was 3 at the time was struggling with a whole host of minor issues with speech and language, coordination,…

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The Rich Family

Meet the Rich family. Daughters Nicole and Jessica have CLN2. #battenday2023

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A Poem By Scarlett

A poem about home, written by 10 year old Scarlett Evans, sister to Sam and Alice both with CLN3 and baby brother George. Here Scarlett shares how special home is with Mum Natalie, Step dad Dave and her family. We…

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Mum Kelly Shares Her Words To Help Raise Awareness

Beautiful Monnay has CLN6 and her mum Kelly shares her words to help raise awareness of Batten disease on awareness day. #battenday2023

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Kaycee’s Smile

Meet Kaycee and her contagious smile! #battenday2023 #showusyourorange #battenawareness #bdfa #battendisease

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Laura’s Story

"Life is not easy now and we are in a maze of different professionals, we feel over whelmed by this, and take life day by day." In January 2014, our baby girl Anna was born on the same day as…

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Pam And Gary Tell Us About Their Son Robert

In our next post for Awareness day, Pam and Gary tell us about their son Robert’s diagnosis with CLN3. #battenday2023 #showusyourorange #battenawareness #bdfa #battendisease

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