Our fundraiser is in support of the Williams family and their 16 month old son, Rory James who is diagnosed with Miller Dieker Syndrome (MDS) which is a condition characterized by a pattern of abnormal brain development known as Lissencephaly. MDS is a rare genetic disorder and Rory and his parents are fighting for his life. Rory battles constant daily seizures, breathing difficulty, is fed through a feeding tube and is developmentally delayed. He and his parents spend a lot of time at the hospital and need your support. Beth grew up in Prescott WI and Woodbury MN and is a nurse at United Hospital. Ta Juan is a veteran staff sergeant with the United States Marine Corp, served 3 tours in Iraq, and works for DirecTV.
Select the links below for:
More about Rory's story
Rory's story on the news (video and story)
Contact the fundraiser director: [email redacted] for any questions.
All benefit proceeds will go directly to the Ness-Williams family for Rory's needs and expenses.
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