by Scarlett Leisure
I am here today to testify on behalf of my daughter in hopes that her story can help legalize Medical Marijuana. Savannah is now fourteen months old and has already been through so much. Savannah was born full term and thought to be a normal, healthy baby. She was developing on track until she was 11 weeks old, when she had her first unprovoked, tonic-clonic seizure. Within 2 hours of her first seizure, she had 4 more. This began her journey with seizure medications.
Due to her age, her doctors felt genetic testing would be helpful. Her epilepsy panel came back with a frameshift deletion mutation in SMC1A, located on one of her X-chromosomes. Savannah is only one of a few girls in the world right now known to have this same exact gene change; so we don't know much about it, other than the fact that it causes a catastrophic form of intractable epilepsy. There is no known medication successful in treating this syndrome.
Savannah was on several different seizure medications. She was taking four medications at a time, along with the ketogenic diet. After taking all of these precautions, she was still having at least 5-6 tonic-clonic seizures a day, all of which required the use of oxygen. We had to administer rescue medication and call the paramedics at least 3 times a week as well. From 11 weeks old to 10 months old Savannah was admitted to Cincinnati Children's and UK Children's hospitals because of increased seizure activity.
The side effects Savannah was having while taking her seizure medications were devastating and showed no relief from her seizures. Instead, she started to retrogress. At 10 months old she had the head control of a two-month-old and had very little eye contact.
I couldn't bare to watch my daughter suffer any longer. We tried to get her into clinical trials for cannabis oil but we were unsuccessful; so we decided to take matters into our own hands and do what we thought was our only option, what we felt was the best thing we could do for Savannah. We made our way to Colorado and started cannabis oil on our own. This was the best decision we could have made for our child. She has improved so much since she started taking cannabis oil.
She is now off of all of her seizure medications and is no longer on the ketogenic diet. Within two weeks of coming off the seizure medication, she started sitting up, looking directly at us, and saying mama and dada. We were told these things were more than likely not going to happen. If she was still on the seizure medication prescribed by her doctors, she would still be seizing daily and none of the progress she has made would have happened.
Today, Savannah has only had 8 seizures in 5 months. We haven't had to use oxygen or rescue medication and she has not been admitted to the hospital due to increased seizure activity since we started using cannabis oil. After seeing the hope that cannabis oil has been able to give my daughter and my family, I believe that it should be legal.
As a parent, I shouldn't have to drive nineteen and a half hours breaking federal laws to save my child's life. Nor should I have to fear being turned into Child Protective Services for doing my best to save my daughter.
When Savannah had her g-tube placed, the surgery department of Cincinnati Children Hospital called the hospital's CPS on me for giving Savannah cannabis oil. They notified her neurologist who took care of the issue so that we didn't have any more problems. Why should I have to worry or be afraid to inform the doctors taking care of my child about the oil saving her life and giving her the quality of life?
This is why I found a CBD support group and started taking my child's life into my own hands. I successfully weaned Savannah off of all seizure medication on my own, which was one of the scariest things I've ever had to do. Because I did this on my own, I was scared to go into Savannah's follow up Neurology appointment at Cincinnati Children's Hospital. In fact, I almost rescheduled, but they needed to see the results. Her neurologist was amazed. They couldn't believe Savannah was the same baby they had been seeing for the past year. Not only were they amazed that she had gone from daily seizures to (at the time) six in 111 days; they couldn't believe how much she had improved developmentally, how opinionated and interactive she had become and how much her gross and fine motor skills had improved.
My daughter's medical records are proof that cannabis is the only thing that can and is saving her life. Cannabis oil needs to be legal for my daughter and everyone else that suffers from a medical condition that can benefit from the use of medical marijuana