Originally posted on The Grateful Life:


I want to rage at the world. Beat my fist against the earth and demand answers. Why? WHY? Why Ronan? Why Emily? Why anyone?

Ronan is dying. There is no saving him. Not now, not ever. He was born with Tay-Sachs, and he’ll die of it – probably within the next day, or handful of days. They’ve stopped life-sustaining measures and instead opted for palliative ones, to ease any discomfort he goes through. Wikipedia describes the horrible progress of Tay Sachs in cold, definite terms.

Infants with Tay–Sachs disease appear to develop normally for the first six months after birth. Then, as neurons become distended with gangliosides, a relentless deterioration of mental and physical abilities begins. The child becomes blind, deaf, unable to swallow, atrophied, and paralytic. Death usually occurs before the age of four.”

Cruel, isn’t it? To have those first six months, to feel in your…

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