Photo: RNZ / Mark Papalii
Jacob Davies' dream was to be in Guinness World Records one day as the longest-living person with Prader-Willi Syndrome.
Sadly, he died in May 2023 aged just 20, following months of poor supervision at a NZCL facility in Levin.
An investigation by the Health and Disability Commission found one-held-accountable-for-disabled-son-s-death his death - due to organ failure and sepsis from a perforated bowel - was "avoidable".
His mother Jo Davies has launched a petition to require organisations to "provide disorder-specific training for staff before working with individuals who have health needs and safety risks associated with a particular disorder/health condition".
Her son was in excellent physical health before he was sent to NZCL.
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