A handful of children from around New Zealand suffer from a cruel inherited disorder known as Batten disease.
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.
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.
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:
Brad Timms article from the Otago Daily Times
Brad Timms article from Stuff.co.nz
Katie Archer (left) also had Batten disease. Sadly, Katie passed away in 2018 aged 10. In these videos you can see what life was like for Katie and her family in 2015, and then in 2017.
Link to 2015 Katie Archer video from CureKidsNZ
2017 Katie Archer video from the NZ Herald
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Next: What causes Batten disease?