{"id":4019,"date":"2025-10-06T13:50:57","date_gmt":"2025-10-06T00:50:57","guid":{"rendered":"https:\/\/blogs.otago.ac.nz\/thesheet\/?page_id=4019"},"modified":"2025-10-06T14:46:28","modified_gmt":"2025-10-06T01:46:28","slug":"what-is-batten-disease","status":"publish","type":"page","link":"https:\/\/blogs.otago.ac.nz\/thesheet\/school-resources\/batten-disease\/what-is-batten-disease\/","title":{"rendered":"What is Batten disease?"},"content":{"rendered":"\n

What is Batten disease?<\/h2>\n\n\n\n

A handful of children from around New Zealand suffer from a cruel inherited disorder known as Batten disease.<\/p>\n\n\n\n

At first these children are healthy and normal. Then between the ages of about 5 and 10 years, they start to develop symptoms including vision problems, seizures, personality and behaviour changes, slow learning, clumsiness, or stumbling.<\/p>\n\n\n\n

The symptoms gradually get worse, until eventually the children become blind, bedridden and demented. They usually die before they reach their late teens or twenties. There are currently no cures or effective treatments.<\/p>\n\n\n\n

\"A<\/figure>
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Brad Timms of Timaru (pictured left) has Batten disease. His older sister JordynRose also had the disease and died when she was 19. You can read more about what his life is like in these articles:<\/p>\n\n\n\n

A glimmer of hope (Otago Daily Times, 2015)<\/a><\/p>\n\n\n\n

Brad Timms article (Stuff.co.nz, 2017)<\/a><\/p>\n<\/div><\/div>\n\n\n\n

\"A<\/figure>
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Katie Archer (left) also had Batten disease. Katie passed away in 2018 aged 10. In the videos below you can see what life was like for Katie and her family as her condition progressed, first in 2015, and then in 2017.<\/p>\n<\/div><\/div>\n\n\n\n

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