I’m very pleased that my poem (ocean beach road) is in the latest edition of Turbine/Kapohau. The poem is about my little sister, Joanne. Ocean Beach Road in Whangarei Heads is where we lived when the signs of Joanne’s rare condition, Sanfillippo syndrome (a type of childhood dementia – surely one of the cruelest diseases), were becoming more noticeable. This photo would have been taken when she was 8 or 9, part of a series of photos my parents took to remember her, as doctors, unsure of a diagnosis, had told us she only had a few months to live. We finally learned what was wrong about ten years later. Joanne was 37 when she died in 2005. You don’t stop being a sister just because your sister dies.

Joanne Freegard

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