Parents of Young Boy with Menkes Disease, Change Feelings of Hopelessness to HopeFULness

March 17, 2013

My son Kody was born December 28, 2005 as a healthy bundle of joy. But we immediately noticed something was not right. He was failing to thrive, not gaining weight, etc. Finally at 10 months old, we got the diagnosis of Menkes disease when his primary care provider noticed his hair and sent him to a neurologist. We were heartbroken.

“Menkes syndrome is a disorder that affects copper levels in the body. It is characterized by sparse, kinky hair; failure to gain weight and grow at the expected rate (failure to thrive); and deterioration of the nervous system. Additional signs and symptoms include weak muscle tone (hypotonia), sagging facial features, seizures, developmental delay, and intellectual disability. Children with Menkes syndrome typically begin to develop symptoms during infancy and often do not live past age 3. Early treatment with copper may improve the prognosis in some affected individuals. In rare cases, symptoms begin later in childhood.”

By the time he was 22 months old, he had gotten to the point of needing a pediatric gastroenterologist and a G-tube (for food and medicine) in his stomach. Eventually his organs failed one after another on the inside, but outside, there was nothing but smiles through the pain.

At the tender age of 27 months, our precious Kody earned his wings and went to be with Jesus. Since then, our family has been doing everything in our power to raise awareness for this horrible disease.

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