120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation

The Rare Life · Mar 30, 2023 · 50m

If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth.

Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter Claire’s recent rare diagnosis, how she’s coping with her new life as the parent of a medically…