Meet the incredible Lewis! His mum Samantha tells their story Lewis was born in February 2004, and he was adorable. He did not show signs of illness (aside from usual baby/toddler gripes!) until February 2006 when he had a slight…
Sarah is the BDFA's fundraising assistant, who works tirelessly to support our fundraisers in events throughout the year. Help us to do more for the Batten community in the UK but helping us to raise valuable funds with this years…
Marika is mum to Nel, who was diagnosed with CLN6 Batten disease. She shares Nel's story It's night, and everyone is asleep. Unfortunately, this night isn't one of the nights I'll sleep through. Tears and sorrow have won this night.…
Hello, I am Steph, I am the Matron of the Batten’s service in Manchester. As a newly qualified nurse in 2012 I worked in Stoke on Trent where I trained, and I worked on a surgical and oncology ward. In…
Beatrice is 4 years old and was diagnosed last July with CLN2 Batten Disease. Her mum shared with us, ''Here is a video of Beatrice playing football on the beach recently, we are so happy she is still able to…
We are pleased to share this blog, written by Evan, in memory of his cousins, Ellie Mae and Caleb who both had CLN2 Batten disease: “Whoever said, “Never meet your heroes” obviously had the wrong ones. Because I’ve met my…
Anna's mun Laura shares the highs and lows of her diagnosis Anna was diagnosed with CLN3 Batten disease two years ago. She struggles with depression, anxiety, hallucinations, sleep and terrible meltdowns. It is the most devastating and heartbreaking disease. Anna…
BDFA Trustee Bob shares his family story about his son Frank Heart-breaking news In October 2012 a Neurologist gave us the worst imaginable news. The youngest of our three children, Frank, was diagnosed with Late Infantile Batten Disease, a rare,…
Today is to raise awareness and celebrate the people in our community but we also remember to families who have lost loved ones. On Batten disease awareness day we remember all of the children and young people who we have…
We are looking forward to celebrating the incredible families in our community and raising awareness together. Today can also be also be difficult for families affected by Batten disease and we send our love to you all.
