Why We Advocate by Cat Stevens

Seven years ago, our family’s life was turned upside down when my daughter Halle was born with a rare genetic disorder called mitochondrial disease. During that time we have had strong support from doctors, nurses, therapists, caregivers, and family who have worked with us to help Halle live life to the best of her ability. Though we had never interacted much with the world of “special needs” prior to her birth, we simply adore our child.
That adoration is really a deep love and desire for her to live a beautiful life. Somehow, prior to Halle’s birth, I had never been up close and personal with seizures, even though they are quite prevalent and many people live with them.
After watching Halle live with seizures and trying to help her through them, I can tell you — they are awful.
Watching Halle as she begins to jerk and moan — and sometimes stop breathing — has been a heartbreaking thing to have to witness repeatedly. There are so many other brave families out there dealing with this on a daily basis. The fear that accompanies each call to 9-1-1 is difficult to describe.
My husband and I ventured into the realm of seizure medication for Halle with supportive geneticists and neurologists. Our team of doctors helped us learn how to treat seizures and worked with us to find a combination that would help Halle. It’s so terrifying to have to give your 10-week-old medication that sedates and dulls the brain while possibly permanently damaging peripheral vision. When your child has a disability, there are things along the way that you just have to get used to. Though it is never easy, our family has learned to live with the fear of seizures, and we have seen that we all — especially Halle — can handle more than we ever imagined.
When Halle was three, with the help of our neurologist, we found a pharmaceutical combination of two traditional seizure medications that controlled her seizures pretty well, though not entirely. Around that same time, we began to see news of medical cannabis treating seizures successfully. Since we will do anything to help our daughter, we, of course, wanted to try.
With the support of our team of doctors, we started adding hemp-derived cannabis oil, which is legal in South Carolina, to her daily regimen of nine medicines! We also conducted an EEG (brain wave scan) just prior to starting the cannabis oil, and then again six weeks later. The results were in Halle’s favor because her number of seizures decreased significantly. Not only did we see fewer seizures, her EEG showed fewer spikes and less seizure activity on the whole. This was great news! However, hemp contains fewer cannabinoids (which calm the brain) than cannabis, which means it isn’t the most effective treatment option for every seizure patient. Ultimately, to help Halle and as many other children as possible, we need to legalize medical cannabis in South Carolina.
My husband and I are very moderate and would never say that cannabis is a magic bullet for seizures. Like all medications, it helps some children and not others. Yet it does indeed work for some, and therefore it should be an option for doctors to recommend and patients to access. It should be a decision made between a doctor and a patient.
All of this is how I became involved in the medical cannabis advocacy movement in South Carolina, which is funny since I am from the ‘Just Say No’ generation.

I never expected to become a vocal advocate for medical cannabis, but life takes interesting twists and turns. Without a doubt, I believe strongly that cannabis does have medical benefits, and more and more studies are showing this. In other words, the data in support of cannabis as a medical treatment are growing.
That’s why I, along with many others who have children with disabilities and seizures — and U.S. veterans, those with cancer, and those with debilitating pain — are supporting the South Carolina Compassionate Care Act, which will help us provide access to medical cannabis to those who need it for medical treatment of a serious illness.
Like the 29 states who have already done so, I firmly believe South Carolina can help those suffering with seizures through a tightly regulated medical cannabis program. A big part of our success will be through educating our representatives and communities on this topic.
As we prepare for the 2018 legislative session, many advocates of this bill are hard at work and preparing to make a strong push for passing legislation next spring. We’d love for you to in us in our efforts to help those among us who cannot advocate for themselves – and we need you! The more voices we have raising awareness on this issue, the better. To get involved with CompassionateSC, visit https://compassionatesc.com/ and sign up for updates and information.

Giving Tuesday and Holiday Fundraising Campaign

https:/compassionatesc.com/donations/ Occurring this year on November 28, #GivingTuesday is held...

Jenifer's Story - Autoimmune/Chronic Pain

My name is Jenifer Edelen, I am 30 years old,...

Leave your comment