Twins Toby and Cory, and their little sister Izzy all have the rare condition juvenile Batten disease. Children with this disease experience devastating symptoms including sight loss resulting in blindness, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues. And tragically, the disease is fatal. We have recently funded a study that could offer the first-ever medicine for children suffering from the condition - giving hope to parents Dee and Jody, that one

Today is International Batten Disease Awareness Day 🧡 This means that families all over the world will be raising awareness of a disease which affects children and young adults. Batten Disease has no cure and is always fatal. Help us to create awareness by interacting and sharing our posts 🧡 We are super proud of our little girl, she was born into a world of rare disease. At three years old she is already advocating for her brother and sister who are affected by this horrific disease 💔 Batten