“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…
“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.…
“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…
“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…
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…
“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…
“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…
“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…
“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…
“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…