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Batten Storytelling 2021

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

William’s Story

“We have enough worry to deal with daily. Constant battles are exhausting and so unnecessary” William is 18 and has CLN3. His mother, Maria Minns, talks about how she has always had to fight to get William what he needs,…

Sheyne & Amber’s Story

“On a day to day basis we don’t think or talk about Batten disease unless we need to. We don’t let it rule our lives.” Chantelle Cammack, mother of Sheyne, 14, and Amber, 11, who both have CLN2 Batten disease, …

Adam Ockelford, The Amber Trust

“Through music, the children were able to bond with each other and work together.” Adam Ockelford, professor of music at the University of Roehampton and founder of The Amber Trust, tells the story of how his charity uses music to…

Louis’s Story

“A lot of things have changed over the years, and sometimes I get upset looking at old videos of things Nicole used to do but now she can’t” 10-year-old Louis is brother to Nicole, 9, and Jessica, 5, who both…

Sally’s Story, The Maypole Project

“In 2003 The Maypole Project was founded; a unique provision specifically for families with children with complex medical needs.” Sally Flatteau Taylor, Founder, CEO and Lead Therapist at The Maypole Project tells her story of working with Battens families In…

Bertie’s Story

“We cherished the pure joy of holding our boy and soaking up the peace.” Mimi Petty, whose youngest son Bertie died from CLN1 Batten disease aged 4, explains why she set up Bertie’s Helpers and the work they do for…

David’s Story, Friend & Supporter of the Batten Community

“I wasn’t sure what I could do to help, so, as well as other fund raising I chose to release music.” David McGovern, who owns the record store Beyond Vinyl in Newcastle Upon Tyne, tells the story of why he…

Consultant Paediatrician, Dr Richard Brown’s Story

“The big thing that has changed during my career has been the development of effective treatment for CLN2 – we can now treat children to help them avoid losing skills.” Dr Richard Brown shares his story of treating children with…

Debbie’s Story

“Batten disease stole his future, although his spirit is still there intact, never to be defeated, I can assure you, that is a fact” Debbie Norris, grandmother of 22-year-old Jordan who has Batten disease, finds that putting her feelings into…

Jennifer’s Story

“I focused on the beauty that my children have brought to me…they are each my lotus flowers and Batten was the murky waters.” Jennifer VanHoutan, mom to four children, two of whom have been lost to Batten disease, tells of…

Elliott’s Story

“A year ago Elliott was more physically able, more communicative, he was easier to play with…” Claire Jackson, mum of 4-year-old Elliott, explains how hard it was to get a CLN2 diagnosis and why early testing is vital to prevent…

Alexandra’s Story

“I sometimes feel jealous when I see friends with their siblings doing things together that I wish I could do with Reece.” Reece’s 18-year-old sister Alexandra shares her story about the joy of having a new baby brother, and how…

Zlatko Sisic’s Story, BDFA Chair

“I have a massive desire to see the patients and families having their lives improved – that is my only motivation”  BDFA Chair, Zlatko Sisic, tells his story of how his own rare disease, medical training and experience give him…

Matilda’s Story

“I try to walk, I try to talk, I try to eat each day. This disease is slowly talking parts of me away.” Mel, mother to 11-year-old Matilda, the first child in the UK to access enzyme replacement therapy, shares…

Robert’s Story

“We smile at the very special memories we made in those last ten days: recreating holidays, playing Rob’s favourite music, and setting up the pub in his room.” Pam Turner whose son Robert died at the age of 33 from…

Samuel & Alice’s Story

“A two minute phone call confirmed what my heart already knew. My beautiful, intelligent, sassy, baby girl had been given the same death sentence as her brother.” Natalie Evans, describes the grief of finding out that her youngest daughter Alice…

Auntie Liz’s Story

“Our children found it heart-breaking, as we all did, but to see them being brave on each visit, not knowing if it was the last, was just so tough.” Liz Brownnutt, auntie to Ellie Mae and Caleb, who died from…

Ophthalmologist, Robert Henderson’s Story

“I knew I loved paediatric ophthalmology but wanted to combine this with retinal surgery so that I could be a part of the new gene therapy revolution.” Ophthalmologist, Robert Henderson, tells of how his medical career path led him to…

Leo’s Story

“It was then that I was told that Leo, our little boy, our baby, has a life limiting and fatal condition.” Mum, Lara Olivacce tells the story of her 13-year-old son Leo’s diagnosis with CLN3 and the importance of talking…

“Thinking of all families affected by Batten disease on this International Batten Disease awareness day. Beefy’s Charity Foundation is proud to support the Batten Disease Family Association offering support to families in the UK who are facing this devastating disease.” Sir Ian Botham.

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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