Update 1
11 August 2020Lani and Jim were informed last week that because Harlan has a confirmed diagnosis, if he was to receive the initial medication before he was 6 months old, he could remain asymptomatic for longer. They were then informed that PHARMAC would not fund this and that they had to only come up with a million dollars to pay for it themselves!!!
****This medication is fully funded in Australia BUT not here. With Covid, it means there is no chance of relocating! It's so hard to know that there is help for him right here but that its out of reach!!
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