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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 604: Why We Are Here
This week, perhaps you've wondered in a big-picture kind of sense why we are here. Well, Tess has some ideas about that.
8 min - SED 603: So You've Got Sleep Apnea
This week, if you stop breathing multiple times during the night, that's actually not good for you.
8 min - SED 602: Zero Oats
This week, Tess heads to the hospital for an upper endoscopy, breakfast not included.
5 min - SED 601: Dad Camp Gets Company
This week, let's check in on our girl Tess as our summer continues and we search for fun things to do.
6 min - SED 600: Beige and Salmon
This week, we're trying to get home from Puerto Rico, where Tess has had a seizure.
12 min - SED 599: Awake and Combative
This week, we're in Puerto Rico, where Tess has had a seizure and ambulance ride.
17 min - SED 598: Four in the Morning in Fajardo
This week, we are in Fajardo, Puerto Rico, where Tess meets a friend while wading in a shallow pool, and they both seem to know something that we don't.
15 min - 5 min
- SED 596: Super Grateful This Thing Sucks
This week, another close call with Tess, this time at school.
8 min - SED 595: The Case of the Strong Grip
This week, detectives are on the case. What happens when the obvious answer to a mystery turns out to be wrong?
12 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.