Learning about Goldenhar Syndrome

May 19, 2020 · 43m 5s
Learning about Goldenhar Syndrome
Description

Bonnie Hunt is a mother of three children, including a medically complex child, who has spent a lot of time in hospitals and doctors’ offices. Greg has Goldenhar Syndrome, as...

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Bonnie Hunt is a mother of three children, including a medically complex
child, who has spent a lot of time in hospitals and doctors’ offices. Greg has
Goldenhar Syndrome, as well as LPA ring-sling complex. She is from the
Canadian Prairies and is familiar with many hospitals in the country.
She is a devoted mother and advocate for families dealing with
Goldenhar Syndrome.

Bonnie joins Anna to talk about what Goldenhar Syndrome is and how this rare birth defect has affected her family. She also talks about what it means to have a child with special medical needs in rural Canada and the special challenges her family faces dealing with hospitals that are many miles from her home.

Recorded during the height of the COVID-19, Bonnie and Anna discuss what it means for a medically-fragile child to deal with germs, how the coronavirus is affecting the congenital heart defect community, and what language is now part of the world's experience and how that vocabulary might help Bonnie in the future.

To learn more about Bonnie, check out her blog: https://dwellinglogs.com

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Author Anna Jaworski
Organization Anna Jaworski
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