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Emma de Tracy Gould has had some small relief in the months since Stuff first ran her story in 2020 but the pain and fatigue of living with EDS continues, as does her battle to receive disability pension in Western Australia, where she has lived since 2010.
A former Nelson family living in Western Australia are continuing to fight for funding assistance to help their daughter manage a debilitating genetic disorder. However, the de Tracy Gould family s appeal for a disability pension for daughter Emma has been rejected after specialists said she did not meet the criteria, in part because her condition was not considered permanent.