Sick kids, desperate parents, and the battle for experimental drugs

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JENN MCNARY KNOWS ANGER. It has overcome her often, and with the ravaging might that only a mother knows when her child is dying. Except in her case, it’s not one son but two who face a death sentence.

At 34, McNary’s face still has the glow of youth, and it lights up when she talks about all four of her kids, although she knows she has given most of her life, her energy, and all of her fight to her two oldest. As McNary sits in the kitchen of her modest apartment in Pembroke, her eyes harden as she remembers the moment a few years back when she realized there was something worse than knowing both of her children would die — knowing there was something out there that could help them, but that only one of them could have.

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