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Mom fights to get her son controversial medicine

Posted at 8:41 PM, Sep 09, 2015
and last updated 2015-09-09 20:41:14-04

An Indiana mom is fighting to get a controversial drug that she says could be the last option for improving her son’s quality of life.

The trouble? It’s made from industrial cannabis and she needs approval from state lawmakers to make it happen. CBD oil can be sprayed under the tongue or taken as a capsule. It is not approved by the FDA, but it’s legal in more than a dozen states, including Kentucky.

RELATED | Marijuana refugees' seek help for sick daughter

Shirley Nelson hopes her plea sways state lawmakers to allow the drug when they meet in a summer study committee later this month.

Her son, John, was born at 26 weeks. His parents call him a “miracle baby.” 

John was born with cerebral palsy. He’s suffered from severe seizures that have become more frequent in the last few years.

"We're watching him from being able to do some of the things he could do earlier in life that he can no longer do,” Nelson said. 

She points to the major milestones: John’s first walk, and the time he sat up by himself.

"I squealed. It scared him and he fell back, thank goodness into the bed. And I asked how did you do that? Show me. And he did,” she said.

Nelson said the seizures are robbing her son of his life. The family has tried several medications, but Nelson feels stuck.

"His neurologists have told us we're maxing out. She cannot increase his medications because they're showing up in his liver as damaging."

That’s why she created an online petition to legalize CBD oil. She’s hopeful it could offer her son relief, while helping to get him off some of the medications. She plans to take her case straight to state lawmakers later this month.

"I don't want him to suffer. See, I believe strongly in God. And I know if John died tomorrow, where he'd be. He'd be whole, and he wouldn't have these problems. But I'd kind of like to hold on to him for a while longer."

RTV6 reached out to a few members of the committee who did not want to comment on the issue yet. We also reached out to a number of law enforcement agencies. Indiana State Police isn’t commenting on pending legislation and the Indiana Sheriff’s Association does not have a position yet.