Our son Michael is affected with a rare and severe form of epilepsy known as Lennox-Gastaut Syndrome (LGS). There is no known cure for this disease. The seizures associated with LGS are pervasive and devastating. Michael, due to his condition, struggles to be outdoors or even exposed to indirect sunlight in our home. The direct damage from LGS is significant cognitive disabilities, which include the inability to verbally communicate with others. The collateral damage from LGS to our family is hard to put into words.
Before Michael's first seizure at six months of age, I thought I understood the meaning of the word pain. I thought I knew suffering. I knew nothing. Helplessly watching seizures rob my son of his abilities has slowly and methodically injected a type of physical and emotional pain in my heart that is indescribable. Over the past decade, we have tried special diets, surgical endeavors, alternative treatments and a never ending list of anti-seizure medications that would leave you breathless, if not simply in its scope, but their ultimate futility.
I believe there may be hope for Michael and other children like him. This hope, which my wife and I cling to like a small flotation device in the middle of a violent sea, is now being suppressed in Pennsylvania by an ignorant and indifferent vocal minority.
This hope is medical marijuana. Just a few years ago, in Colorado, a little girl named Charlotte Figi was slowly being ravaged by a different form of epilepsy, known as Dravet Syndrome. After realizing hospitals and prescribed medications could do nothing for their daughter, Charlotte's parents reluctantly turned to medical marijuana. After jumping through hoops, Charlotte began taking a form of medical marijuana high in cannabinoids (known as CBD) and low in THC, the principal psychoactive component of the plant. The dose of marijuana was provided to Charlotte in an oil form, no different than cough medicine. Within days, Charlotte's seizures, once totaling 300 a day, were soon reduced to single digits. Today, Charlotte is thriving. She is walking, talking, and riding a bicycle.
The strain of marijuana that has effectively answered her parent's prayers is now known as Charlotte's web. It is grown by a courageous group of brothers in Colorado and administered through a nonprofit organization that provides cannabis to adults and children suffering from a host of diseases, including the type of epilepsy affecting our son.
I would invite any politician, or vocal critic of the controlled and compassionate movement for immediate use of medical marijuana for children, to come to my home and meet with our family. Meet Michael and tell him you do not have the courage to open your mind to this non-conventional cure. Meet his mother and I, and his older brother, and tell us our pain and fear is permanent and our hope, useless. After you are finished meeting with us, tell the parents of Charlotte Figi, that if you had your way, you would have blocked the only known cure available to their daughter.
I must confess that 10 years ago I would have been indifferent to this movement. If engaged, I would have had questions and concerns about medical marijuana and probably harbored some skepticism. I no longer have the luxury of such insular thinking. My family has been drafted into this movement. I want to fight for this hope. I want to ease your own fears about this movement. Medical marijuana should be legalized in this state today. Michael and other children like him in our state should be given the opportunity to thrive like Charlotte Figi, and the many other Colorado children like her now improving because of this medication.
In this great country, invisible state lines should never form a barrier to protecting and helping sick children. To those who have the ability to fix this problem, open up your eyes and your hearts. We need leaders with courage who will not let false information and nonsensical stereotypes deter them from making the right decision on this issue. There is too much to be gained and lost by unsubstantiated opposition, or worse, passive indifference.
— Christopher A. Ferro is a local attorney and former York County prosecutor.