Episode 78: Olivia: Dumping the bucket | Pivoting as a rare disease family

Meet Olivia and her beautiful family. Her youngest son, Archer, was born with a slew of medical complications and was later diagnosed with not one, but two rare diseases: Kabuki Syndrome and RYR1. This family has had to make some logistical decisions, including career and geographic moves, to make sure their entire family is balancing the best way they can.

Topics discussed that you do not want to miss:

  • Two rare genetic syndromes that do not play well together
  • The Teeter Totter: spouses handling tough news
  • Born at the start of the pandemic… plus career shifts, and postpartum depression
  • The language of trauma
  • The lady in the grocery store 

Links and resources:

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Where to listen: 

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