Give Me a Sail

By Laura Edwards

Learning that someone you love has Batten disease is like being stabbed with a serrated knife. Watching Batten disease attack someone you love is like twisting that knife a little more deeply over days, weeks, months, and years.

After almost four years of this, I know a lot more about Batten disease but still nothing more about the future than I did on day one. If there is one thing I do know, though, it’s that I have to keep breathing.
Because tomorrow, the sun will rise…and who knows what the tide will bring?
Give me a sail.



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