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My son Kody was born December 28, 2005 as a healthy bundle of joy. We immediately noticed something was not right. He was failure 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.

By the time he was 22 months old he had gotten to the
point of needing a pediatric gastroenterologist and placed a g-tube (feeding and medicine) in his stomach. Eventually his organs failed one after another on the inside but outside 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.

 

Tara



Posted: August, 2012

 
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