"i consider all of them part of my family now" - pennsylvania mom jamie, on first time meeting other sanfilippo families

Shippenville PA mom Jamie (right) with son Trenton (18 yrs old, Sanfilippo type A)

In her 23 years as a special needs teacher, Jamie Hooks has worked with many children of all different backgrounds, with cognitive and physical disabilities of all sorts.  But, not once over those many school years and classrooms had Jamie ever had a student who displayed signs of cognitive regression and childhood dementia-like symptoms.  So when her own son Trent (now 18) was diagnosed with Sanfilippo Syndrome (type A), back in 2019 (at age 13), the Shippenville (PA) mother of three almost couldn't believe what she was hearing.  Getting a diagnosis like Sanfilippo Syndrome rattles an entire family to the core and changes them forever. But it also causes us to seek human connections that help us to feel less alone in our journeys. And that's exactly what Jamie and her family did.  Shortly after receiving Trent’s diagnosis, the Hooks family traveled to a National MPS conference and, for the first time, had the chance to meet (in person) many other families that find themselves along the very same harrowing journey.  While at the conference, Jamie made it a point to step outside of her comfort zone and introduce herself and get to know each and every single Sanfilippo family in attendance that weekend.  After all, she says, “These people are all my family now”.

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We are all on this journey together"

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The Hooks family, Christmas 2023