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
Meet Sam and Alice who both have a diagnosis of CLN3. Mum Natalie shares her moving experience of diagnosis.The BDFA would like to thank all of the families for being so courageous in sharing their thoughts and feelings in our…
Hayley is mum to Addy who has CLN2 and her big brother Samuel, she tells us how his poem came to be This poem came out of Samuel and I chatting one evening and him asking "What do you think…
Next up is Gabrielle, mum to amazing Kadiee who has CLN6. Gabrielle shares her powerful words about her daughter to raise awareness today. #battenday2023
''We found the strength from somewhere to keep going and we are very proud of what we have achieved from then until now'' Hi, I’m Gail, proud Mam to our precious sweethearts Louis Nicole and Jessica and together with my…
The BDFA supports families at every stage of the Batten journey, including our bereaved community. This is the beautiful Tia, her mum Tammy and dad Lewis share their thoughts about her. We are sending love to all families who have…
Batten disease effects all members of the family, in our next post on awareness day, Jordan's grandmother Debbie shares her thoughts about him. #battendiseasebattenday2023
'Her world had completely stopped and with that her spark and smile had faded. I was extremely worried. I reached out to the BDFA to ask for help.'' Mum Kirsty tells her story of her daughter Ava Bella's diagnosis of…