Amy and Wayne Young packed up and moved to Oregon from Alabama after giving away half of their possessions in search of a new life for their daughter, Leni.
Leni, while still in her mother’s womb, suffered from a rare stroke that left her fighting for a normal life. Just seven months after joining the rest of the world, she started suffering with hundreds of daily seizures.
“She was in rough shape,” Amy Young stated in a telephone interview with the Montgomery Adviser on Thursday. “She couldn’t hold her head up for a minute or so at a time. She spent an awful lot of time in her own world, and she was pretty out of it from the drugs she had to take to stay alive.”
The Young’s were among many families that fought for Carly’s Law, a measure that put up $1 million to the Birmingham branch of the University of Alabama network of colleges to study the effects of CBD oil (cannabis oil rich in cannabidiol and low in the pyschoactive THC) on children suffering from severe forms of epilepsy.
Unfortunately, Leni was not able to become a part of the study, which forced their move to a more ‘friendly’ location, one that allowed access to this important plant extract called CBD oil.
Nearly 6 months ago, the Young’s started giving 3 small doses of CBD to Leni daily, and after only an hour from her first taste, they began to notice a difference. Leni started to not only listen more intently, but began to also focus visually on the world, like her parents, and others from across the room.
“Within a week, she was holding her head up and watching ‘Frozen,’ ” Young said. “She loved it before, but she would listen to it. Here she was watching it . . . almost immediately, her seizures started to ebb. She has one every four to six weeks. She is almost sitting up independently, and standing with support.”
Because of this amazing family sharing their experiences with their legislators, like Rep. Mike Ball and Sen. Paul Sanford, Leni’s Law has now been brought to the state legislature in Alabama. This new bill will allow families with a valid prescription for CBD oil to possess the oil outside of the UAB study program.
Bob Shepard, a spokesman for UAB, said Thursday about 70 people – half adults, half children – are participating in the study. The university expects to release the first results of the study at an American Academy of Neurology conference early next month.
“Anecdotally, the researchers say they are seeing benefits in some patients,” Shepherd said. “Not everybody, but some patients have shown a decrease in seizures. Encouraging is the word you hear.”
Even if you don’t live in Alabama, please contact the state representatives and voice your support of expanding the current cannabis bills by visiting: http://www.legislature.state.al.us/aliswww/default.aspx