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Wednesday, September 9, 2009


My 13 year old son, Nate, has had this dark spot on his chin for what seems like forever. He and I have tried to figure it out. Everyone else keeps saying it is "nothing." Nate and I have poked at it and talked about it and tried to figure it out. We have asked other people and have gotten, "it's just a shadow." He has also been getting a little attitude with me and doing this lip snarl thing.

His pediatrician said that she has never seen anything like it in 43 years but she knew who would get to the bottom of it. She made a referal and we went to see him today.

My son has Scleroderma en coup de sabre There is no treatment and the damage that is done is done. The lip snarl is degeneration and shifting. His nose also turns to the side. We have taken X-rays and the damage is *only* muscular not skeletal. (Praise God) the shifting in his back is a scolitoic rotation and seemingly unrealted. God is good.

This is only the beginning of us figuring this all out. While we are sorry to be affected by this disease, we are sooo grateful to learn that it is localized and not systemic, or fatal.

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