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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 475: Awaken
If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.
10 min - SED 474: Fifty
I have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.
8 min - SED 473: The Trails Are Yours
Come spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.
7 min - 10 min
- SED 471: This Won't Happen Without You
Psst! Hey. You. Yeah. I'm talking to you. Can you help me?
Here's where to send folks to donate: usp7.org/donate11 min - SED 470: H-Town
Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas.
This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that: https://bit.ly/3vGHHIy
22 min - SED 469: Texas or Bust
An invitation from across the Atlantic. And a return after many years to a city west of here. The city where it all began.
10 min - SED 468: Get Outta My Room
The bedroom of your teenage child. It's a refuge. Sacred territory. Never to be breached, unless specifically invited inside.
6 min - SED 467: We Gotta Stop Meeting Like This - Part 2
Our sweet Tess returns to the emergency room, for the THIRD time in a month.
14 min - SED 466: We Gotta Stop Meeting Like This - Part 1
Our sweet Tess returns to the emergency room, for the second time in a month. The latest in a long line of medical mysteries involving our girl.
10 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.