A fourth Iowa family has come forward out of the shadows, feeling the need to share their story with legislators here in Iowa.
This mother pleading her case hopes that you will take the time to read and share her story. If you or anyone you know would like to anonymously share your story as to how cannabis has or can help you or a loved one, please email me at firstname.lastname@example.org. I’ll put your story here on WeedPress, and share it with legislatures this next session. You can also write to me on Facebook.
To whom it may concern,
Thank you for taking the time to read this letter, as it is of utmost importance. I am writing to plead for you to take action, so my son can receive the medication he desperately needs.
My nine year old son has Lennox Gastaut Syndrome (lgsfoundation.org), a rare type of pediatric epilepsy with a poor prognosis. The seizures began when he was three for no known reason. His seizures have not responded to current treatments over the past five years, and he continues to suffer from five different seizure types daily. He is not a candidate for surgery, and there are no other medications available to try. We are currently on a special diet and risky seizure medication that only helps minimally. If we cannot control his seizures, this will lead to cumulative brain trauma resulting in the loss of abilities, speech, and memory.
We have high expectations that he will respond to the use of cannabis high in cannabidiol, a nonpsychoactive component of medical marijuana. Cannabidiol, or CBD, can be given in an oil or capsule form with very little THC (the psychoactive component). In other words, my child would not smoke anything, and this would not get him ‘high’. Current regulations do not allow us to have access to this medication in Iowa. We are currently splitting up our family, so my husband and son can become Colorado residents and we can have legal access to this medication, particularly a strain called Charlotte’s Web.
Our cause is urgent. My son has hundreds of seizures weekly. If this continues, he will continue to regress. I need to fight for my son. CBD has been shown to decrease the excitability of the brain, lessoning or in some cases, stopping the seizures, and helping with mood and behavior. If we can stop the seizures at this stage in the syndrome, he may be able to preserve his existing brain function and lead a more normal life.
Presently, our life revolves around his seizures. At least two hours of each day is spent preparing his meals. He is on a diet no adult could tolerate: high fat, no sugar, and all tiny portions measured to the 10th of a gram. He cannot play with play-doh or finger paints, as he may absorb some of the carbohydrates through his skin. He suffers balance problems and subsequent injuries. He has had to have surgery to have a g-tube placed for medicines and nourishment. He has dealt with horrible side effects from his medications including depression, cognitive delays, memory loss, weight loss, drooling, slurring his speech, stuttering, hair growth, tremors, liver damage, acid reflux, stunted growth, weight loss, nausea and vomiting, and bone loss. We have to give him Valium several times per week as a ‘rescue’ med when the seizures will not stop, and then we have to make sure he does not stop breathing. A few months ago, we gave up on the last available medication to try after he quit eating for seven days; vomited relentlessly; and cried day after day, night after night. He even told me he wished he was not alive anymore. Let me remind you, this boy is nine years old.
Every morning we awake with a sense of dread. What kind of a day will he have? If he’s startled, he has seizures, so we tiptoe into his room to gently wake him. Sometimes it works, most days it doesn’t. His lean body convulses, tears well in his eyes, and his mouth moves but words won’t come out. I can feel he is scared. His younger brother watches, helpless. After minutes that feel like hours, we give his rescue med. The seizures do not stop, so we give it again. Breathe in, breathe out. We time his breathing, ready to begin CPR if needed. The seizures stop, for a while anyway. The rest of the day he remains in a fog from the medication. Another day is lost.
I was born and raised a farm girl in Iowa. I work in the medical field and my husband is a mechanic. We work hard and contribute to Iowa’s growth. We live on the same section of land as my parents, my sister’s family, and my brother’s family. My husband’s parents are three miles away. This place is important to me and always has been. The elementary school, including his full time paraprofessional and school team, have been very involved in his life daily, providing another level of much needed support. We actually moved back to this area two years ago, because we needed more day to day support from our extended family. We moved into a house that was my grandparents’ and renovated it with love, making it our home. We never planned on leaving again.
Now we have to split up our family and move away from the only support system we have. I will have to stay behind to continue to work to keep our health insurance and pay for two residences. My son will have to leave his mom, Gramma and Grampa, Nana and Papa, cousins, and his best buddy – his little brother. As a mother, not being there with him is going to be heart breaking. To make matters worse, stress and changes in routine frequently trigger his seizures. I do not know how he is going to handle this.
What I do know is this- based on much research and the firsthand accounts of others- we must try.
It is unjust that we have to move in order to save our son.
Marijuana is a plant. Many plant derivatives are medications used commonly today. We cannot ignore the potential effect cannabidiol extracted from this plant can have on epilepsy. Please do not let the stigma associated with marijuana block access of this medication to suffering children whose lives depend upon it.
Please support a bill to legalize pediatric access to medical marijuana that is high in CBD, low in THC, so my child can grow up in rural Iowa, like I did, and be surrounded by a family that loves him so much. Please help him get access to this medicine that can help his brain heal, grow, and make new memories.
Also, please view http://www.youtube.com/watch?v=BH5yzEu3JGQ, which features the success stories of Charlotte and Zaki, two children with similar conditions using a particular strain in Colorado called “Charlotte’s Web”. I am hoping the recent media broadcasts, including CNN’s Dr. Sanjay Gupta’s documentary, ‘Weed’, and stories like ours will raise awareness and educate society. We need to separate cannabis treatment for pediatric epilepsy patients from the stigma associated with recreational marijuana. The evidence at this point is undeniable.
~A mother who will not stop fighting~