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148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath
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Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.
So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.
Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Donate to the fundraiser here.
Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.
Listen to Ep 146: The Dad Perspective.
Listen to Ep 104: How to Support the Parents of Disabled Children.
Read Show Up and Bring Coffee by Megan Amrich.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Access the transcript on the website here.
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