Their daughters’ rare disease brought two dads together. Now they’re fighting for early genetic testing in Washington state.
The two fathers had never met in person, but that didn’t matter. They knew each other well. The confusion, the worry, the frustration of being the father of a child who grows and learns and then, suddenly, regresses.
The vocabulary stalls. The seizures start, along with the vision problems. There are outbursts of anger. One daughter started to eat dirt.
Mike Jackson lucked out; he and his wife, Corin, found a neurologist who saw that their daughter, Evelyn, was missing developmental markers and suggested a free genetic test that could provide some answers.
It did: Evelyn was diagnosed with Batten Disease, a fatal inherited disorder that affects between two and four of every 100,000 people living in the United States.
John Barclay and his wife, Courtney, weren’t so lucky. They waited three years for the same genetic test for their daughter, River, that would cost $25,000 they didn’t have. After consulting with two neurologists and pleading with several insurance companies, River was finally tested in 2016.
She, too, had Batten Disease.
But by then, her disease was too far along, …
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