I entirely agree with you that given the rapidly progressing nature of the disease in children, prompt treatment is vital. The support and care given to those suffering from the disease includes a range of treatments and supportive measures, including anti-epileptic medication, physiotherapy and treatment and treatment for dystonia, including bracing and wheelchairs. Progressive feeding problems also require speech and language management and gastrostomy insertion, in addition to the pain management required for end of life care.

Given the wide range of treatments and supportive measures, it is not possible to calculate the average annual cost of treating an individual with a form of Batten disease but it is estimated that there are between 45 and 90 people undergoing care and treatment for all forms of Batten diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.