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Roy Zeighami


We are the Zeighamis (Roy, Zesee, Aziza and Reed). We live in the Dallas area. Our son Reed (born in 2007) has Sanfilippo Syndrome Type A. Sanfilippo Syndrome is a neuro-degenerative disease and children with the disease have an average lifespan of 15 years.

We spent three wonderful years between birth and diagnosis with the impression that Reed was a healthy child. In December 2010 we followed a set of clues that led us to a shattering diagnosis of Sanfilippo Syndrome.

Reed is huge, both his head and body are off the charts. Our pediatrician was concerned that something wasn’t right. She sent us to Scottish Rite Hospital for an x-ray. The doctor found minute skeletal findings; though Reed is large, his bones are shaped like that of a short person. Ultra-sound imaging found that his organs were slightly enlarged. A test in his urine found accumulated GAGs, a compound accumulated in people with a Lysosomal Storage Disease (LSD). In January of 2011, we were crushed to learn that he has Sanfilippo Syndrome.

Your donation will help push forward research for Sanfilippo Syndrome and other MPS diseases. This creates hope for Reed and future generations. Thank you for your generous contributions!

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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.

Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit for more information.


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