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Batten Storytelling 2020

In celebration of this year’s International Batten disease awareness day we are starting a very special storytelling project to provide the opportunity for people from across the ‘Batten space’ to tell their story.

Gail’s story

“Jessica is living proof that early diagnosis and treatment can change the course of this dreadful disease” Sisters, Nicole and Jessica both have CLN2, and their mother, Gail Rich explains the importance of diagnosing and treating Batten disease early on.\…

Consultant Paediatric Neurologist, Ruth Williams’ Story

“We are not at the end of the journey yet… but compared with 30 years ago, it’s a whole new and brighter place to be” Consultant Paediatric Neurologist, Ruth Williams, talks of the huge progress made from the 1980s to…

Hannah’s Story

“Hannah was happier than any of us… and whether or not she was upset or scared, she never let it show. She was a really strong girl” Liv Batterbee, speaks of family life with her sister Hannah, who lived with…

Auntie Em

Auntie Em, is aunt to Ollie, 9, and Amelia, 7, who both have late infantile Batten disease. She talks movingly in this video about the Aunt’s perspective. She talks of her “heart shattering” and the complex guilt family members can…

Professor of Pediatrics, Jonathan Cooper’s Story

“As a scientist I am meant to be logical, totally rational. But my work looking at Batten disease is undeniably emotional” Professor of Pediatrics, Genetics and Neurology, Jonathan Cooper tells his story about what led him to working in the…

Joanna & James’ Story

“The whole family were heartbroken – the devastation, the loss of our children’s future as we had hoped it would be.” Pauline Docherty, who lost her children Joanna and James to CLN3, tells the story of how her journey led…

Michal’s Story

“Michał showed that he wants to live and wants to fight despite everything.” Katarzyna Luc, mother of Michał, aged 5, with CLN2, and his siblings Magdelane and Oliwia, tells the story of their rollercoaster year since Michał’s diagnosis. We fight…

Jack’s Story

“Three years down the line, and Jack’s grandad still cannot talk to anybody about it, he just breaks down hearing the words ‘Batten disease’” Jack’s grandmother gives her perspective on how his diagnosis of CLN2 has affected the entire family.…

Sam’s story

“The thing I underestimated the most was that I would have to learn to grieve for a child that was still alive” Natalie Evans, mother to Sam, aged 9, who has CLN3, and his two sisters Scarlett and Alice, tells…

SeeAbility Nurse, Sarah Kenrick’ Story

“Each person I have met with Batten has given me an invaluable gift, the gift of knowledge of something so rare which I can use to help others” SeeAbility nurse, Sarah Kenrick, tells the story of her life’s work caring…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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.…

Annabelle’s story

“I love going to Rangers and I’m now doing my Bronze Duke of Edinburgh Award…Batten disease will not stop me.” Annabelle Hover, aged 14, tells of the difficulties of living with CLN3 as a teenager, and the amazing achievements she…

Reece’s Story

“We can’t stay hidden away forever, there will be tough decisions… but for now we will keep on going and hope things start improving soon.” Donna Brown tells her story about the highs and lows of life in ‘lockdown’ with…

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