Viewpoint

A mother becomes an outlaw as the governor sleeps

Abby Childers has the CBD Oil and she won’t be afraid to use it. Even if it makes her an outlaw.

“I’m trying to save my daughter’s life,” Abby says, with an assurance borne of a mother’s desperation. “So, yes, I’ll give it to her.”

It may be too late.

Six-year-old Betheny Childers has been back in Levine Children’s Hospital since March 30. In February, I wrote of Betheny's battle with intractable epilepsy and scores of seizures a day, and her mom’s battle to treat her with a cannabis plant extract known as CBD Oil. Abby was one of many parents hopeful they’d be able to give the promising oil to their seriously ill children after N.C. Gov. Pat McCrory, with much fanfare, signed a bill “legalizing” it last July.

They were wrong. The bill merely allowed certain hospitals to set up clinical trials. A professor of neurology at Duke Medical Center said that for suffering children, the new law was of little or no value.

A comment posted after my column ran cracked that if Abby was so concerned about her daughter she'd be headed to Colorado to get the oil, rather than being a political activist.

“That hurt,” Abby told me Monday. “People make such harsh judgments without really knowing ...”

Without knowing, she said, what it means to face splitting up a family in a cross-country move for a treatment not legal here. Without knowing the crushing financial cost. Without knowing Abby already had Betheny on the Colorado waiting list; she got word it was their turn just as the column ran.

Betheny’s neurologist had told Abby she would prescribe CBD Oil, if she could. An attending physician at CMC told Abby in February to “get on that plane and get help.” Betheny couldn't make the trip, so Abby flew to Colorado the next day for training, and now has the oil. But she has yet to give it to Betheny.

“We have to wean her off a drug she’s on, first,” Abby said, “and she’s reacted badly.”

Betheny is now unable to receive an illegal treatment that even her local doctors believe may help her, because she’s become dependent on risky drugs which have not helped, but are legal.

Tuesday, as Betheny headed into her ninth straight night in the hospital, unable to receive nourishment for over 120 hours even through a feeding tube, Abby remained hopeful. Hopeful, though palliative care had been called in. Hopeful, though hospice had been called for an assessment. Hopeful, because there are moments like Monday morning when Betheny was smiling almost like her old self.

But the nights are hard.

“They’re awful. She hasn’t been sleeping at all.”

Abby knows. On the couch in Betheny's hospital room where she, too, has spent each of the past eight nights, Abby isn’t getting much sleep either.

How are you sleeping these days, Governor?

Keith Larson is the mid-morning host on WBT-AM (1110).

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