"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with...
Episode 65 | Holly’s Story – A son with Hereditary Spastic Paraparesis (HSP)
Podcast Show Notes
“I think this may be a parent’s worst nightmare.”
Katie, Certified Child Life Specialist interviews Holly, mom to three children living in Northern California. Holly’s son, Austin, was typical until just after his 1st birthday, then started regressing in gross motor including balance and weak tone and eventually spasticity, which is their biggest concern to this day.
Holly has a sense of humor and outlook that will make you instantly feel connected to her and her family. She talks about the crazy amount of testing that Austin had to go through to find his diagnosis and she also shares stories of what NOT to say to parents who have kids with special needs. My favorite part of our conversation is when Holly talks about how she hates playgrounds but found a way to turn that passion into something for good, their foundation Walk With Austin.
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