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What Charlie Gard’s battle says to rare disease parents
The battle for the life of Charlie Gard
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When You Outlive Your Generation
I grew up in the 70’s and 80’s, the era of neon and Michael Jackson, pop rocks and Coke, E.T. and Stand by Me.
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Letter No. 12: Dear Dragon Mom
Dear Jamie, “Stay with us.”
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Letter No. 8: Dear Rare Disease
Dear Rare Disease Family, I finally built my dream home.
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A Rare Disease Parent’s Top 10 Christmas Wish List
Christmas looks different for parents of kids with rare diseases. And instead of celebration, it’s often a difficult time. Visiting relatives with a child who is wheelchair-bound, or has a feeding tube, or with behavioral difficulties has to be planned, and packed, and possibly scrapped.
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Why I Freak Out When My Son Says He’s Going to College
I don’t know what dang blasted cartoon is telling my son about things like high school and college, but I want to ban it. I drive down the road, rocking in my minivan, 90’s music on a low rumble so my kids can’t hear me sing, and my 8yo is going on and on about…