Alana Sagar

Alana Sagar from Blenheim received $2,000 towards the research of Pallister Killian Syndrome (PKS) an extremely rare disease which affects her two-year old son, Archie.

Currently, Archie is one of three diagnosed with the disease in New Zealand and one of only 200 children diagnosed in the world. PKS is a rare genetic disorder caused by the presence of an abnormal extra chromosome 12 called isochromosome 12p.

As a result of the disease, Archie has extremely weak muscle tone, an intellectual disability, cognitive and development delays as well as severe reflux.

The grant will go towards Alana’s personal research with the view of raising awareness of the disease within the medical industry.