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Felix's Story

Friday, October 21, 2011

Images Captured by Angie Chauvin Photography

Meet Tiny Light Felix.  Felix loves music, books and he loves to snuggle. He is a ‘feisty and tough’ little man.

Felix has been diagnosed with Menkes Syndrome. This is a copper transport disease in which the child cannot metabolize and transport copper to the brain. It is a genetic neurometabolic disease, and it is extremely rare.  The diagnosis was devastating to Felix’s parents. They had a difficult time accepting the fact that their son may not do all of the things that they had dreamt for him.

Menkes is usually a devastating and life-threatening disease. To date, Felix has proved wrong what was expected of his diagnosis. He is responding well to treatment. “Felix has a mutation of Menkes that has never been seen before. It does seem to be more moderate than classic Menkes usually is. We hope that Felix will make his own rules.”

Felix’s parents are inspired by their son’s strength on a daily basis. They rely greatly on the abundance of love and support that they receive from their amazing friends and family. They urge parents in similar positions not to get hung up on their children’s diagnosis. “Let others help you, talk about it when you can, enjoy your child and do not sell him or her short. Don’t take opportunities away from your child in fear of obstacles; deal with them when they come up instead.”

Story by Angela Stephen-Dewhurst


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