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Stronger Every Day: For Parents of Children with Rare Diseases
Stronger Every Day: For Parents of Children with Rare Diseases episodes
- SED 575: Shark Fins
This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 3 of 5.
9 min - SED 574: The Woods
This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility.
8 min - SED 573: Into the Woods
This week, Tess has a life-threatening event, at a time when we're very far from the closest medical facility.
10 min - SED 572: Holiday Break
This week, we're away on a ski vacation as a family. Let's check in with Tess.
3 min - 5 min
- 6 min
- SED 569: The Cup Is Already Broken
This week, someone in our house is considerably under the weather.
7 min - SED 568: Never Get a Car from GM and Other True Stories
This week, got a few fun stories for ya. Vignettes, if you will.
10 min - SED 567: Thankful for Empatica and the Epimonitor
This week, a nifty tech device gets strapped to Tess's wrist.
4 min - SED 566: Riding the Waves of Life
This week, an emerging artist in Maine works with multiple media and begins an exhibition at a local gallery.
6 min
About Stronger Every Day: For Parents of Children with Rare Diseases
From the publisher's feed
This show tells stories about life with Tess, age 15, who has a rare genetic disorder called Hao-Fountain syndrome, Bo Bigelow is Tess's father and primary caretaker. Her disorder causes nonverbal autism, communication disorders, and epilepsy. Bo is an award-winning speaker, writer, filmmaker, and advocate for people with disabilities. He is also a practicing disability-rights attorney.
Bo is a co-founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel.
Over the years, he's told Tess's story to NPR, NBC News, ABC News, The Washington Post, and The Atlantic.