My husband and I were watching television tonight and caught a story on 20/20 about a little girl with congenital insensitivity to pain with anhidrosis (CIPA). According to msnbc, there are only 17 known cases in the United States. Those with the disease cannot feel pain and have no sensitivity to temperature (cannot feel hot or cold). This means very young children who suffer from the disorder injure themselves constantly as they navigate things like teething, learning to walk, etc.
As a parent, I cannot imagine how terrifying, stressful, and heartbreaking it would be to fight to keep your child safe because they have no way of knowing when they are in danger in even the seemingly simplest of circumstances. It's also difficult for me to fully comprehend how many adjustments and adaptations must be necessary for those who live with CIPA. The bravery shown by the children and parents profiled in the few stories I read was truly inspiring.
It was a great reminder to be thankful for all of my blessings. To remember how lucky we are to have a spirited child who is healthy and innately happy. And to challenge me to continue to consider and explore ways I might help to alleviate suffering in the world - in whatever forms it may take and in whatever way I can.
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