Mandy and Kate chat to Rachael, pea mum to a beautiful 5-year-old Robbie, and the Tasmanian representative for Angelman Syndrome Association Australia.

Rachael shares the story of her pregnancy, moving to Hobart in preparation for Robbie’s birth, time in the NICU, Robbie’s surgery at only 9 days of age, and his diagnosis of the rare genetic disorder Angelman Syndrome. Rachael talks about adjusting to Robbie’s medical complexities, feeling like the whole world had changed around her, experiencing the hard days of isolation, loneliness and comparison, but receiving some wonderful support from some amazing and insightful friends.   

Rachael connected online with other Angelman Syndrome parents and developed new and supportive friendships, leading to her role in the association. The Association provides support, information, education, networking, research promotion and advocacy for people and families affected by the syndrome. 

We also learn that Robbie is a gentle and beautiful boy, he loves holding hands and touching faces, he’s patient and works incredibly hard at his therapies, he’s a good big brother and and loves music! 

Thanks for sharing your story with us Rachael! 

For more information about the Angelman Syndrome Association Australia, visit their website or find them on Facebook and Instagram. You can also follow Robbie’s story on Instagram too.  

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