SO Rare, a GGC patient story - Nicolaides Baraitser syndrome

08.15.17

SO Lakelands magazine, a publication of the Index Journal, published a wonderful story about Ash Huffman and his family’s special relationship with GGC.

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For more information, contact Lori Bassett

Lucy's Story

Lucy's Story

When our daughter Lucy had a metabolic crisis at 7 days old, we were shocked and devastated to find out that she was born with a rare genetic disorder (MSUD). Her newborn screening results did not make it back in time to prevent the crisis, and no one at our local hospital was familiar with the disease. They did not know how to treat her. Calls were made to Greenwood Genetic Center to confirm her diagnosis and guide her care. Dr. Champaigne and Ami...

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