Our journey with Batten disease started 9 years ago when after months of trying to fathom why our daughter Isabel who was 3 at the time was struggling with a whole host of minor issues with speech and language, coordination,…
Meet the Rich family. Daughters Nicole and Jessica have CLN2. #battenday2023
A poem about home, written by 10 year old Scarlett Evans, sister to Sam and Alice both with CLN3 and baby brother George. Here Scarlett shares how special home is with Mum Natalie, Step dad Dave and her family. We…
Beautiful Monnay has CLN6 and her mum Kelly shares her words to help raise awareness of Batten disease on awareness day. #battenday2023
Meet Kaycee and her contagious smile! #battenday2023 #showusyourorange #battenawareness #bdfa #battendisease
"Life is not easy now and we are in a maze of different professionals, we feel over whelmed by this, and take life day by day." In January 2014, our baby girl Anna was born on the same day as…
In our next post for Awareness day, Pam and Gary tell us about their son Robert’s diagnosis with CLN3. #battenday2023 #showusyourorange #battenawareness #bdfa #battendisease
I didn’t ever expect to be planning the 18th birthday party for my twin sons. Because doctors said they wouldn’t be around to celebrate it. Andrew is dad to twins Freddie and Louie. They are among only seven or eight…
🧡🧡 IT'S INTERNATIONAL BATTEN DISEASE AWARENESS DAY!!! 🧡🧡 First up today is from Jon who is dad to Joshua who has CLN6. The BDFA helps to support dads and male carers with our regular dad chat meet up on zoom,…
#battenday2023