There's an old joke that the apple never falls far from the tree, with children and parents. In the case of my siblings, my parents and me, the apples didn't so much fall from the tree as were knocked into a suborbital trajectory, landing about as far from one another as possible while still maintaining a linked genome.
However, as we've grown up, my sister and I have sort of migrated towards one another. Since her graduation from Bryn Mawr in 2004, she's worked at Children's Hospital of Philadelphia, wearing various and multiple research hats, all focusing on pediatrics. (My sister is one of those amazing people who can be around sick children and still smile.) Like me, she really loves the stories that go on behind the disease. This morning, she sent me the website Cure 4 Jack, containing medical information and a blog about a child with NEMO and ectodermal displasia. And as you'll see by the front page, the child, Jack, passed away a few days ago.
Touching, sad, and at times very funny, Jack's parents Roy and Charlotte have written a blog that covers their experiences, including the medical chart (cliff notes version), multiple mis-diagnoses, more hospitals than your average medical student will see over the course of their education, and, for the last year, intimate and personal narratives about making the decision to try an experimental treatment - stem cell transplantation - in the hopes of a cure.
It's worth a read, for those of you interested in narration, or even decision-making processes parents go through for their children.
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