Batten Disease Family Association

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About Batten Disease Family Association

Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure. Children are born healthy loosing their vision, suffering severe seizures that are difficult to control; dementia, jerks of limbs; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Ultimately the child or young person will become totally dependent on families and carers for all of their needs. Other symptoms that are commonly seen are hallucinations, memory loss and challenging behaviours. Death is inevitable and, depending on the age of onset and specific genetic diagnosis, may occur anywhere between early childhood and young adulthood. Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.

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