Mandy and Kate talk to Sonja, a self proclaimed Norwegian princess and introduces us to her gorgeous daughter Emmy who lives with Patau Syndrome or Trisomy 13. Emmy was born 7 weeks prematurely, in a dramatic entrance which has paved the way for Emmy's life so far. Sonja shares the story of Emmys birth, her time in SCN and the genetic testing and diagnosis of Patau Syndrome and the mosaic nature of the results. This time was gut wrenching whilst Emmy was in hospital and they couldn't be together.

She came home at 6.5 weeks and was healthy and growing beautifully. Sonja began the journey of hip dysplasia and microcephaly initially and had a hip brace and avoided a head brace. Emmy then got her nickname as baby Elton John with her first pair of glasses.

Sonja grew up in America, and lives in Melbourne, so her family came to Australia with their family heirloom gown for Emmy to wear at her christening. It was a very special time.

Sonja was told to google Patau Syndrome/Trisomy 13 by her Doctor and she found it affects one in 4000 - 20,000 people. Emmy's geneticist told Sonja that her results had not been found in anyone else in the world and now that Emmy is older, they have met another little boy from QLD.

Emmy has had some significant respiratory illness in her life and at age 3, she was extremely unwell and had a cardiac arrest in the ambulance on the way to RCH and thankfully was resuscitated and recovered. She had many respiratory admissions to hospital for many years.

Emmy began schooling in mainstream, and then moved to a specialist school in grade one which coincided by covid 2020. Emmy enjoys school and is now in grade 6.

Emmy is dramatic, friendly, be anyones best friend, she is a storyteller with a terrific memory. She is a Special Olympics athlete and loves being a part of it. She is now heading into the secondary school with a new diagnosis of Autism and Intellectual Disability and the tours for the schools have began.

Sonja is a florist and loves using the creative part of her brain. She is pausing her florist business at the moment, but follow her for when she returns.

Thank you for sharing your story Sonja.

You can find and follow Sonja on Instagram @sonjabarrettgibbons and @sonjagibbonsfloraldesign

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