What No One Tells You About Parenting a Child with Rare Disease - Emergency Surgeries & Advocacy
Description
Being a rare disease parent means living in a world of unpredictability—and in this powerful follow-up episode, Jessica Troiano shares what that really looks like. From a terrifying recent emergency surgery to the countless difficult decisions she’s had to make over the years, Jess opens up about the emotional and mental toll of parenting a medically complex child.
She talks about the weight of advocacy, the fear of the unknown, and how every choice—big or small—can feel overwhelming when your child has 15 medical diagnoses. But even through the hardest moments, she continues to find strength, hope, and deep love in the journey.
Sponsored by Adirondack Trust and Amsure, this episode is a raw and honest look at the side of parenting we rarely hear about. https://www.adirondacktrust.com
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#raredisease #rarediseaseawareness #rarediseases #griefandloss #medicallycomplex
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