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Bertie’s Story

Stuie Petty, 7, lost his little brother Bertie last year at the age of 4. Bertie had CLN1 Batten disease. Stuie has invented a ‘Battens Curer' machine. “My teacher asked us to design an invention to make the world a…

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Consultant, Paul Gissen’s Story

“It is a privilege for me to work with our amazing patients, such a dedicated group of parents and the team at Great Ormond Street Hospital” Paul Gissen, Batten disease consultant, tells us the story of working with families and…

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Oscar’s Story

“Whenever I speak about Oscar, Batten disease and the impact it has on us, I gain a sense of relief.” Alex Jealous tells his story of his 8 year old son Oscar’s recent diagnosis with CLN1, and why he set…

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Finley & Harrison’s Story

“Being a ‘Battens family’ has brought many tears but also many adventures, friends, opportunities and a new perspective on life” Sarah Dodkin, mother of Finley (9) and Harrison (4) both with CLN3, and Arthur, tells of learning to live for…

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Joshua’s Story

“One more day of playing as his brother's closest friend. One more day with family. One more 'let’s pretend.'” Ali Glover shares with us her poem ‘One Day More,’ which she has written for her 8 year old son Joshua…

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Matthew’s Story

“Our lives became about getting through each day at a time and most importantly, making memories to treasure forever.” Mel Hall shares her story of her son Matthew, who died aged 7 with CLN2, talking of the impact of diagnosis…

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Laura’s Story

“Laura’s journey with Batten disease taught me so many things: she inspired us and was a blessing to us all” Ellen Bletsoe talks of the ‘voices of Batten disease’ as she tells the story of her daughter Laura, who died…

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Isabel’s Story

“Our story is filled with such sadness, but it has been compensated with love beyond what we knew was possible” Sophie Pether, mother to 9 year old Isabel who has CLN2, describes the battles they have faced, and the ‘living…

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Scientist, Sara Mole’s Story

“At UCL we chose to concentrate on what we considered the two most promising approaches - gene therapy and drug treatments” Sara Mole, leading Batten scientist and researcher, shares her story about her career working in Batten disease. I began…

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Nicole & Jessica’s Story

“This devastating journey has taught our family just how precious life is” Liz Rich, grandmother of Nicole (8), Jessica (4) both with CLN2, and their brother Louis, gives us a grandparent’s perspective on how Batten disease impacts the whole family.…

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