texas

Family Fights for Bill to Help Daughter with Epilepsy

Karley Davis is almost three years old, and suffers from Dravet Syndrome, a form of intractable epilepsy.

Because of that, she suffers from seizures that can't be controlled by medication. Sometimes, she can have 100 seizures a day.

Every minute, it is painful for her parents.

“Candidly we feel like we have to make terrible decisions about her treatment with our neurologist,” said Father Jeff Davis.

Some of the medications she takes can damage her liver, behavioral rage headaches, and affect her development. They are now turning to CBD oil, which he explains is an oil with small amounts of THC, and says it cannot produce a high.

Representative Stephanie Klick is their lawmaker, and one of the sponsors of the Compassionate Use Act, a bill that would allow them to get that oil here in Texas. She tells NBC 5 after meeting the Davis’ and other families, she decided to work on this bill. She explains that this would be closely regulated, and would require a neurologist prescription.

You can read the full text of the Compassionate Use act here.

The Epilepsy association says some people with epilepsy have been helped by this, and while further research is needed to see its effects on seizures,  it may be an alternative for people running out of them.

People like Karley.

The Bill has been sent to a House committee, the Committee on Public Health. It has yet to be scheduled for a hearing. Representative Myra Crownover, chairman of that committee, had this to say:

“Over 198 bills have been referred to the House Committee on Public Health. A number of these are legislative priorities this session, and the determination of what is heard each hearing is made on a week-by-week basis.

I understand the importance of this issue, especially to the parents and children directly affected, and have taken their stories into account. At this point, it is a matter of prioritizing the legislation before us by what issues are most likely to pass both chambers, the Senate and the House.”

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