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Wednesday, June 2, 2010

Daring to Be Different

Ever get a scab, and it starts to itch…so you scratch it, tearing off the hard, crusty plates of skin, exposing the pink, tender, not-quite-ready flesh beneath?

Now, imagine that about 50% of your body is covered with these stiff, itchy scales. Your neck. Your scalp. Your chest. Under your arms. In fact, it’s so thick under your arms that you can’t sweat. Any temp over 70 degrees sends you sprawling with heat exhaustion. Your face is red. You’re cranky. You can’t hear Mama calling you in out of the heat because your ear canals are lined with the same scales.

This is a condition called Lamellar Ichthyosis. It afflicts approximately 1 in 200,000…and our youngest son, Peter, was born with it. Each year, fewer than 50 children are born in the United States with Lamellar Ichthyosis. They have a high risk of developing sepsis, which can lead to death, and many spend the first several days of their lives in Neonatal Intensive Care. Some are permanently disabled, the thick scale affecting the soles of their feet, palms of their hands and fingers, restricting fine motor skills and even walking.

All are subject to stares, pointing and unkind remarks. It’s not an invisible condition.

I’ve mentioned Peter’s condition here on occasion, mainly in an effort to raise awareness. But as he gets older, and struggles with the challenges of day-to-day living and finding acceptance in society, making friends, you know, all the things “normal” kids do, it seems somehow dishonest to not share some of those challenges.

You might be thinking, “What does this have to do with me? It’s so rare, there’s no way this will ever effect me.”

Possibly. Lamellar Ichthyosis can be caused by a dominant gene mutation or a recessive gene. What that means is that a child with no family history of this genetic disorder can be born with it. Or that anyone, even you, could be a carrier of the recessive gene. So, yes, it could affect you or someone you love.

My point is this: we are not in control of our destinies. We do not choose the traits we are born with. We are all different. We all have weaknesses. And yet our society ridicules and ostracizes those who already have more than their share of challenges.

Some of those challenges are visible…and some are not. Some situations we can understand…and some are beyond understanding.

But wouldn’t it be wonderful if we could reach out to each other with love and kindness, celebrating our similarities, rather than building up walls with the mortar of our differences?

1peter

This post is linked to:

Works for Me Wednesday at We are THAT Family

and

Wordful Wednesday at

3 comments:

  1. He's such a cute guy. I'm sorry he has something like this to deal with, but you're doing wonderful in passing the word along about this condition. I had never heard of it until I started reading your blog. And kudos to you guys for not letting it get you down. *high fives*

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  2. What a sweet, adorable little guy! And such an important lesson for us to remember. Hugs to both of you!

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  3. Thank you ladies. The summers are always more difficult, the hot whether tends to bring out Peter's limitations. My heart aches for him at times...but he is a strong, loving, fun-loving little boy and we are very blessed to be his parents.

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