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At this point in time there is no specific treatment that can halt or reverse the progression of Batten Disease. Seizures can be controlled with medications and other problems are treated as they arise. Physical and occupational therapy may help children retain function as long as possible. Currently there are experimental treatments that are in the trial phase in North America but because

they are in they are early in their development, information on the outcomes is scarce and the number of children that are accepted into the trials is extremely small. It is unknown at this point whether these treatments will be successful, little information is available regarding the outcomes thus far.

Treatment is also available in China but it is not covered by most health care plans or insurance and must be funded by the individual's family. Care must also be taken to thoroughly research any centre that is offering treatment to ensure their authenticity.


After great consideration, we chose to have Tatyanna treated at Tiantan Puhua neurological hosptial in Beijing China in 2008, 2009 and 2011. While the treatment was not a cure, we are confident that it has slowed the progression of the disease and helped to increase her quality of life significantly. We are more than happy to talk about our experiences at Tiantan Puhua so please feel free to contact us at : tatyannashope@live.ca