Batten disease is a rare genetic neurodegenerative disease that always results in death. There are a number of types of the disease. Symptoms include blindness, uncontrollable seizures, sleep difficulties, loss of speech and swallowing, and the development of childhood dementia. Each type of Batten disease is diagnosed at different points of a child’s life and the life expectancy ranges from 4 – 30 years old depending on which type of the disease the child has.
There is no cure.
Samantha Barber, CEO of BDFA, said: “Every Batten Disease Awareness Day is pivotal in raising awareness of this devastating rare disease. This year BDFA are delighted and grateful that several venues are marking this important day. Members of the public can show their support by wearing something orange and sharing their picture with us on social media using #BattenDisease.
“Each year, children are diagnosed with Batten disease. They and their families rely on the BDFA to support them through the difficult times. We receive no government funding. If you would like to donate to BDFA to show your support, please visit our website at www.bdfa-uk.org.uk.”
Organisers are asking the public to share their pictures of buildings lit up on social media using hashtag #battendisease.