awareness day

“In my heart I know it was her time and asked to take my girl home… Bee taught us so much during our time together and those lessons will be there for the rest of our life.” Blanie White’s family…

“I would describe myself as very hands on dad and I love being able to look after Nicole and Jessica and their big brother Louis who is amazing.” Matthew Rich is dad to Louis age 11, Nicole age 10 and…

“Even when children seemed to be ‘locked-in,’ music could find a way in.” Rebecca Atkinson, researcher at the University of Brighton and Director of Chiltern Music Therapy tells how music therapy programmes have helped children with Batten disease I remember…

“The children and young people I have worked with, alongside their parents and carers, have taught me so much,” The inspirational Laura Lee is a Clinical Nurse Specialist at Great Ormond Street (GOSH), working with children and young people with…

“The hardest part of Batten disease is watching Jeffrey’s ability decline, but his smile and laugh keeps the whole family going.” Sheryl Lawson,  from Accrington, talks about her son Jeffrey, five, his diagnosis with CLN2 Batten disease and how the…

“I’m looking forward to helping other families and really hope they will feel supported… I wish I had had this help available when Kayden was diagnosed.” Valerie Trayner from Edinburgh, tells the story of her 13-year-old son Kayden, who has…

“We look for the things that make us smile or laugh in all of this.” Marta Walotka, mother to four-year-old triplets Lena, Nina and Pola, talks about how she and her husband have coped with Lena and Nina’s CLN2 diagnoses…

“The love that Annabel gives is beyond that of most 13-year-old children, I cherish those moments, I hug her just that little bit tighter.” James Yarrow is dad to Annabel, 13, who has CLN3 Batten disease. James talks about the…