Please help my son.
Will is 11 years old and has a rare seizure disorder called Lennox-Gastaut Syndrome (LGS). LGS is characterized by multiple types of catastrophic seizures that he suffers from on a daily basis. Will wears a helmet with a face bar on it almost 24/7, except for when he’s in his medical stroller or in his medically enclosed bed at home, to protect him from physical injuries. However, even with the full face helmet on, Will has suffered from a concussion, significant mouth and facial trauma, broken teeth, and an almost broken nose twice. We have tried all treatments that were available to us- aggressive steroids, countless seizure meds, special diets, a surgically implanted VNS, homeopathy, neuro feedback, and have had no success with any of them. As a last resort, we are now being advised by doctors to have brain surgery done for Will, and unfortunately, the brain surgery would only help to reduce one of the four types of seizures he has. In addition, because of Will's seizures, he is completely nonverbal, incontinent, and cognitively about a 2 year old in which he requires constant supervision because of his lack of sense of danger, and his at risk to flee.
Cannabidiol (CBD) oil is a strain of medical marijuana that is CBD rich, and so low in THC (the psychoactive component) that a "high" is not experienced by the individual. The oil is also administered by adding it to food, just like with any other prescription drug that Will takes. Presently, Will takes 24 pills a day which have many side effects and leave him in a constant fog. The CBD oil has been proven that it can help with seizure control, and has no side effects because it is natural.
Will and our family are what you would call “living on luck”. Every day, we pray that Will can get through the day without one of his seizures causing him serious injuries, or even a fatal one. No family should have to live like this. Not when it is being proven over and over again throughout our country that CBD oil is helping so many children and others.
We believe that Nebraska is capable of legalizing a responsible program for this oil that is physician supervised. As a mother of a suffering child, I am asking you to please seek legislation to help Will and countless others with severe epilepsy. Families in Nebraska deserve and need to have another option for their loved ones espeically when all other pharmaceuticals have not given them relief. They need to be given the option to use CBD oil without the fear of prosecution from the government. This is not a political issue. It is a compassion issue.
Thank you and God bless,
Will's mom- Shelley Gillen