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A day in the life of a child living with a rare disease

Raising a child with a rare disease can be very challenging and isolating. That's why mother of two, Meagan Cross - whose child, Molly, was diagnosed with a rare neurodevelopmental disorder at the age of 1, decided to create a web-based. global Angelman syndrome registry so other parents wouldn't feel so alone.


(Pictured: Meagan's daughter, Molly who is now 12 years old)

The annual Rare Disease Day Walk/Fun Run on Sunday, which Meagan also started, is about supporting those living with a rare disease; their carers and their families. 

It begins at 8.30am from the Fun ship on the Esplanade and there's 3km and 5km options. Entry is $15 for adults and $5 for kids over 5.


(Pictured: Meagan and I in the StarFm studios)

Listen to Meagan Cross explain what it's like to raise a child living with a rare disease.