The Rare Life

61: The Story of Westley


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Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications. Because of this, his mom Erica never fit in with the scores of other parents of children with Down syndrome. Add in a couple of rare sub-diagnoses, and it’s clear that Erica is certainly one of us.

In this episode, Erica shares a bit about Westley’s 455-day hospital stay which ended with a tough decision to switch him to comfort care and bring him home to spend the rest of his life cuddling and spending time with his three older brothers and parents. She also opens up about the complex grief she has been dealing with since his passing a few months ago, that brought both heartbreak and relief.

Links:

Check out pics of Erica + fam on the website.

Follow Erica on Instagram.

Follow me on Instagram.

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The Rare LifeBy Madeline Cheney

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