“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…
Happy #BattenDay2022 to all of the families in our Batten community and particularly thinking of those who are remembering their loved ones today. There is already a distinctly 'orange' buzz on social media. We are kicking off the day with…
Thursday 9th June 2022 6pm -7pm This session is open to all members of the wider family who have been touched by the loss of a loved one to Batten disease. Please email admin@bdfa-uk.org.uk for the link to join. If…
Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to be held via Zoom video-conferencing on Saturday 25th June 2022, 2pm. AGENDA Introduction and Welcome 2. AGM Minutes year end 2020 – To…
The BDFA are running two sessions for families this year on awareness day. At 4pm we are holding a special (and probably very orange!) edition of our virtual family cuppa get together on Zoom.Join us and tell us what you…