 Pennsylvania Sanfilippo mom Jamie's mother-in-law had recently passed away from a rare fatal brain disease, and her kids were therefore well aware of the devastation caused by severe dementia conditions. So when it came time for Jamie and her husband Cory to share the devastating news of Trenton's Sanfilippo (type B) diagnosis with the two younger boys, she explained to them "What we just went through with your grandmother, is likely what we're going to go through again - only this time with Trenton". Hear it in Jamie's own words in the clip below, from a Sanfilippo Roundtable interview we conducted back in early 2023.  Be completely honest, let them ask a lot of questions, and allow them to lead the discussion" 
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Her native country Ukraine was invaded by Russia in early 2022. Later that year, she found out that her son Lucas had Sanfilippo Syndrome. Julia Berzoy shares her family's harrowing story.  Julia Berzoy lives in Florida and is the mom to son Lucas, who was diagnosed with Sanfilippo Sydrome (type C) very recently, in late 2022 – a distressful year for her and her family, to say the least, given that a lot of her family members still live in Ukraine. She recently participated in a Sanfilippo Roundtable chat with other Sanfilippo parents, where she shared her story about her son's path to a diagnosis and navigating life following this devastating news.  To watch the full Sanfilippo Roundtable #1, click below: |
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Mike Dobbyn, Archives
November 2024
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