“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 try and help them all as best I can.” Sylvia Langford, from Devon, gives a grandmother’s perspective as she tells the story of her grandson Rio, 20, and how his diagnosis of Batten disease CLN3 has had an impact…
“When I came off the phone I was howling. How can my daughter suddenly go from being perfectly healthy, to going blind, to being told she’s going to die?” Caitlin Passey, aged eight, was diagnosed with CLN3 Batten disease during…
“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…
“To say it has been a battle is an understatement, but we remain positive.” Kirsty Hartigan, mother to ten year old Ava-Bella and nine month old Frankie, shares her story about the struggles they have faced since Ava was diagnosed…
“You asked where she was and it made me cry, I couldn’t tell you where your big sister had gone.” 15-year-old Poppy Brownnutt wrote the official 2022 BDFA Awareness Day song, a beautiful and moving tribute about losing her cousins,…
“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…
“We know that hope is so important” Mimi Petty writes about Bertie, her son who passed away from CLN1 Batten disease at the age of four. Mimi writes movingly about the devastation of a diagnosis of disease with “no treatment…