Tuesday, April 12, 2011

The Unknown

There is so much I am still learning about nevi and how they become. I like so many fear the unknown, and most people have never heard of CMN the skin condition Haleigh has. And for most people myself included your don't start to learn things unless you have to. Before Haleigh was born there was no need for me to know all about CMN, or how it affects lives. But awareness is something I have come to realize is a must.

Last Friday there was a little 2 year old boy who died from a complication of CMN, not from surgery, but from tumors that can develop in the Central Nervus System. Have I know this is a complication of what Haleigh has? Yes, why have I not said anything before? Because what research I can find and believe me its not a lot, has shown that this complication is rare, and mostly seen in kids who have nevi on their spine and tops on the head. Also there is a link between children who are born with a lot of small nevi instead on the one large one Haleigh was born with. Since Haleigh is in neither of these groups I have tried to buy it in the back of my mind. The truth of the matter is though I should be making a voice for it, not hiding it away. We are raising funds for travel and should be raising more awareness than we are.
Words can not express the loss this family has endured, I hope we as a fellow nevus family member can shine a little light on awareness, and pull in some funds for more research on CMN and eventually have a cure.

Its scary to be in the unknown, to not know if your child will be in the very real % that has a serious complication from this skin disorder, or will we be among the ones that only worry about removal?. The research I have read seems to be that if we can get her to 13 years old with no complications including Cancers then she will be at no higher risk that anyone else. That is 10 and a half years away.

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