All the updated news related to batten disease

All the news related to batten disease updated in real time

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Family fundraising to complete bucket list for daughter with terminal condition

The family of a nine-year-old with a terminal condition are fundraising to tick items off a bucket list and create a “safe haven” for her at home. Caitlin Passey was diagnosed with Juvenile Batten Disease in October 2021 – an inherited disorder ...

19 Jul 2023 at 00:01

Boy, eight, with rare disease completes Ironkids Wales with walker

The mother of an eight-year-old boy with a rare disease has spoken of her pride at seeing him complete Ironkids Wales with a walker. Isaac Tilley was officially diagnosed with CLN2 Batten Disease – an inherited condition which causes childhood ...

22 Sept 2024 at 15:25

Cambridgeshire community to take on running challenge for girl with terminal illness

Locals in Cambridgeshire have come together to take on a running challenge which pushes participants to the “absolute brink” to support a 10-year-old with a terminal illness. Caitlin Passey was diagnosed with juvenile Batten disease in ...

17 Jun 2024 at 14:12

Health

Parents of girl, 4, diagnosed with rare disease causing blindness, paralysis and death are in phase of ‘prolonged grief’

The parents of a girl diagnosed with a rare disease causing blindness and paralysis, with a life expectancy of 10 to 12 years without treatment, say they are in a phase of “prolonged grief”. Emma Vukic and Max Bridge, both 38, from ...

16 Sept 2025 at 06:30

Years
2026

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