Rare disease strikes twice in Erath County family

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by CHRIS HAWES / WFAA-TV

wfaa.com

Posted on January 29, 2010 at 12:49 AM

Updated Friday, Jan 29 at 5:38 PM

STEPHENVILLE — Watching Morgan Gain is like looking through a window in time to her big sister, Mikayla, one year ago when she, too, was a happy, bright preschooler.

But one day last April, a change came.

Mikayla's vision suddenly worsened. Seizures followed, and then a devastating diagnosis.

She has Alpers' disease. Her central nervous system is degenerating, taking her sight, hearing, mind, and — ultimately — her life.

Mikayla's mother and father did everything they could, even agreeing to a hemispherectomy — removing half her brain — hoping to slow the seizures.

They had resigned themselves to the end, taking her home for a long goodbye, when they learned that the family's misery was just beginning.

On Thursday, doctors called with test results for three-year-old Morgan.

She has Alpers' as well.

Of the three Gain children, only Madison has been spared.

"I cried," said Dasa Gain, their mother.

Does what has happened leave her questioning God?

"Yeah, I find myself questioning His reason, but not His presence," she said.

God's presence, Gain says, is found in the fact that, for now, Stephenville has ensured that the family is almost never alone. A steady stream of love, volunteers and donations flow through their door.

But at night, when new and old friends leave, it's just Dasa, John and the gentle hum of machines as they take turns watching their four-year-old sleeping.

When it's John's turn, Dasa is once again in fight mode — going to the same experts, the same Web sites that ultimately failed Mikayla, hoping now to find new answers for Morgan.

"I'm in a state of 'Take charge, take care,'" Dasa Gain said — knowing that later — much later, she says — she'll fall apart.

E-mail chawes@wfaa.com

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