2,369
VIEWS
4
COMMENTS
 
SHARES
About this iReport
  • Not verified by CNN

  • Click to view 4epilepsy's profile
    Posted January 17, 2015 by
    4epilepsy
    Location
    Louisville, Kentucky
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    More from 4epilepsy

    Moms Take #stoptheseizures Medical Cannabis Appeal to Michelle Obama

     

    What if your child had dozens, maybe even hundreds, of seizures per day? You’ve tried scores of medications but the fits won’t stop. There is something that could help, a plant, but the only thing standing between it and your child is government prohibition.

     

    Welcome to our world.

     

    Non-psychoactive cannabis oils can sometimes quell debilitating seizures, so naturally as parents we fought for legislation in states throughout the country that lacked medical cannabis programs. Yet, despite legislative success our children’s access to this potentially lifesaving plant often remains blocked by national bans. Most doctors won’t order a substance that can cost them their licenses, even when given the green light by states. So, we formed the Parents Coalition for Rescheduling Medical Cannabis to advocate for the removal of these federal prohibitions on safe access.

     

    It hasn’t been easy. Our children require constant care. Kelly addresses legislative panels between homeschooling her daughter, Sloane, who sleeps all day due to seizure induced fatigue. Stephanie prioritizes meeting her congressman as she worries what toll her daughter Emily’s next seizure will exact. The child has already suffered three broken collar bones, a broken arm, an elbow broken in four places, and smashed teeth that required a root canal. Lisa, who must monitor her epileptic teenage daughter day and night on a full house security system consisting of eight cameras while raising two other children, speaks with the media. Theresa, who has spent so much time at the hospital with Tommy that she’s had to miss her other children growing up, testifies at county hearings. And, I write this article through the thick fog of chemo brain while constantly monitoring my severely autistic son, who has the impulse control of a toddler but the reach of a grown man.

     

    Our website isn’t snazzy. We have no money to pay expensive lobbyists. There are no glitzy celebrities championing our cause. What we have is a mother’s will to see her child live another day. We have a father’s determination that come hell or high water his child will get this treatment. And we have our stories.

     

    We tell our children’s stories again and again, hoping our collective voice might will the federal government to action. We’ve tried every angle: the Attorney General, the Health and Human Services Secretary, the President of the United States himself and responses fall short. This time we take our case to First Lady Michelle Obama, mother to mother. She may not hold an official office like those other Washington power players, but she has the President’s ear.

     

    We are posting to social media pictures of our epileptic kids with the hashtag #stoptheseizures and the tagline cannabis is medicine. We’ve also asked those without epilepsy to make and share their #stoptheseizures photos in solidarity with our kids. These will be turned into postcards and mailed from across the country to Michelle Obama on February 9, 2015 so that they arrive in an avalanche on approximately the same day. Our request is this: ask the President to remove whole plant cannabis from its banned Schedule 1 status so research can happen in the United States and patients can have safe access.

     

    We invite readers to visit our Facebook page and see the pictures. As you scroll through them understand that these are not just one dimensional images of kids and adults you don’t know from places you don’t live. Each one of them is a story.

     

    Jennifer isn’t just a beautiful, otherwise typical teenager struck with epilepsy during the best years of her life. To legally access this plant for her seizures Jen had to move across country, leaving her father and sister behind in Virginia. Victoria, pictured above, is not just a girl being dosed with a plant extract that’s illegal in her home state. Know that when given those doses in Colorado this child’s brain woke up; her seizures so quelled that Victoria played with toys for the first time in her life, only to slip back into her fog upon returning home to Georgia. Instead of paying for dance lessons or cheerleading like typical parents, Victoria’s mom and dad pay burial fees because they never know if the next seizure might take their daughter's last breath. My son, Alex, is not just a thirteen year old in a Sponge Bob sweatshirt squinting from the camera flash. At three he had savant qualities and by six my boy was back in diapers with an IQ of 52, because that’s what mild epilepsy can do to a young brain.

     

    Know that the voiceless, those with catastrophic epilepsy, have stories, too. Some of those pictured have lost mobility, if they ever had it at all. There are feeding tubes, all night bedside vigils, and routine trips to the emergency room for seizures that could kill them. Know that some have already failed two dozen anti-epileptic drugs with far worse side effects than cannabis. Know that these innocents must then endure complete sedation from benzodiazepine drugs like Valium to survive their seizures and that they can suffer horrific withdrawals like any drug addict. Understand that a day might come when even benzos stop working and that cannabis oil may literally be their last hope.

     

    We want simple things for our children most parents get to take for granted. The chance he may one day walk, talk, or use the bathroom on his own. That she may one day play with toys or smile intentionally. Or, that they can get through the school day unburdened by horrific convulsions, perhaps someday even play sports like other kids or drive a car.

     

    Will cannabis oil be a miracle for all of them? We don’t know, but our kids deserve the right to find out.

     

    Michelle Obama, help us stop the seizures. It’s time.

     

    Facebook: https://www.facebook.com/parentsrescheduling?ref=hl

    Add your Story Add your Story