Rita Wooten and her husband Ricky face an excruciating choice: watch their 4-year-old son suffer from repeated seizures — or violate the law in order to help him.
Eli Wooten suffers from a rare form of epilepsy which Rita Wooten told a legislative panel is “impossible to treat,” at least presently in Kentucky. Eli has experienced “hundreds and hundreds of seizures” and all his parents can do is watch. At times Eli seemed on the verge of death before his parents got him to a children’s hospital in Cincinnati.
Some children with the disorder experienced a reduction in the number and severity of seizures after taking small doses of cannibidiol, an oil extracted from hemp. But it’s not legal in Kentucky.
The Wootens, who live in Hyden in Leslie County, have thought about traveling to Colorado where they can purchase the oil legally.
“But how do I legally do that and come back here?” Rita Wooten asked the Senate Health and Welfare Committee Wednesday. “We shouldn’t have to leave our home and jobs to take care of our child.”
Wooten was testifying on behalf of Senate Bill 124, sponsored by Committee Chairwoman Sen. Julie Denton, R-Louisville, which would allow the legal prescribing of the substance at either of the state’s research hospitals.
The bill contains an emergency clause that makes it effective immediately upon passage by the General Assembly and signature by the governor rather than 90 days later which is customary.
Denton told Wooten she is “fairly confident it will pass the Senate and go to the House and pass there and go on to the governor” for his signature. That should happen no later than mid-April and maybe sooner.
But Denton, whose own child once suffered from seizures, suggested the Wootens go ahead and obtain the drug for Eli because the law against it isn’t enforced in Kentucky.
“You don’t have anything to lose,” Denton told the tearful Wooten.
Sen. Julian Carroll, D-Frankfort, an attorney and former governor, went further. He told Wooten to buy her plane tickets, get the oil for her son and come back home.
“By the time you get back, this should be through (the legislature) and if you do get in trouble, you call me,” Carroll said.
Rita Wooten said later that she and her husband have thought about it, but feared the potential legal consequences.
They feared that if Eli is given the drug, it might turn up somehow in a drug screen “and we could lose our child or go to jail.”
Johnie Collier of Paducah also has a small child with a rare and painful health condition called Toddler IBS. His 2-year-old daughter, Lola, “cries out in pain — Mommy, Mommy help me,” but there’s nothing Collier or his wife can do.
He’s seeking legalization for the medical use of marijuana which contains a psychoactive chemical known as THC. THC has been shown in some cases to help children with conditions like Lola’s.
“CBD oils only won’t help her,” Collier told the committee. “THC helps with the pain and with the nausea.”
Sen. Perry Clark, D-Louisville, is sponsoring a medical marijuana bill but its prospects are dimmer than the more restrictive CBD oil bill sponsored by Denton. Rep. Mary Lou Marzian, D-Louisville, a nurse, is sponsoring a “compassionate use” bill in the House but like Clark’s bill it faces opposition from some. The House Health and Welfare Committee will take up Marzian’s bill Thursday.
CBD does not contain THC. Denton sympathized with Collier, telling him she wished her bill could go further but doesn’t believe an expanded bill could pass the legislature right now.
Denton’s bill passed the committee and now goes to the full Senate. After the vote, Debbie McGrath, executive director of the Epilepsy Foundation of Kentucky said, “Kentucky can be proud today because of the step you’ve taken.”
Clark said the bill represents a “good start.” But for the Wootens, it was more.
“I’m tickled, tickled, tickled, “Rita Wooten said. “We’re a happy family.”
Ronnie Ellis writes for CNHI News Service and is based in Frankfort. Reach him at email@example.com. Follow CNHI News Service stories on Twitter at www.twitter.com/cnhifrankfort.
Read more in the print or digital Glasgow Daily Times. http://glasgowdailytimes.cnhi.newsmemory.com/