Bay family departs for new home, new hope in Colorado

Paula Lyles snapped this photo of her daughter, Jordan, on a recent trip to the beach at Bradstreet's Landing. Jordan has Dravet Syndrome, a rare form of epilepsy, and will head to Colorado with her mother at the end of the month to start treatment with medical cannabis.

I have a confession to make. I am addicted to the beach. I can feel it calling my name, especially as early evening approaches.

“I’m running to the grocery,” I tell my husband and secretly hit the beach at Bradstreet's Landing before I go. I love to see the waves rolling in. I love to walk the beach and pick up driftwood, rocks and sea glass. I breathe deeply and relax just for a minute or two before continuing on with my duties, my mental batteries recharged.

The other night, I stopped by the beach on a mission. With my tote in hand, I gathered up lots of beautiful driftwood and a pile of stones of all different colors.

As I was leaving, three ladies asked what I planned to do with my haul. I smiled and stopped to explain to them how very much I love the beach and that I was gathering enough to take with me to our new home in Colorado Springs to remind me of the beauty and peace of Lake Erie. They asked why I was moving away from the place that I love.

“I’m going there to save my daughter’s life,” I replied.

My daughter, Jordan, has Dravet Syndrome, a rare and catastrophic form of pediatric epilepsy. We’re going to Colorado to use medical cannabis to treat Jordan’s seizures.

I must preface what I am going to tell you with the fact that I am one of the most straight-laced people you will ever meet. I have never tried nor liked anything about smoking or recreational drugs. I taught both my girls from day one that smoking and drugs were bad and killed people.

Medical cannabis treatment does not equate to smoking pot! Medical cannabis is derived from a plant that is high in cannabidiol, CBD, and low in THC, tetrahydrocannabinol. THC is but one of the nearly 400 chemical compounds found in the cannabis plant. THC is the mind-altering ingredient found in the cannabis plant, but THC has powerful benefits as well, such as preventing nausea and vomiting in cancer patients, increasing appetite in patients who have a hard time eating, reducing pain and so much more. THC has antioxidant properties and anti-spasmodic properties as well.

The cannabidiol in the cannabis plant is medically amazing. CBD is an analgesic, anti-inflammatory, anti-insomnia, anti-depressant, anti-epileptic, anti-bacterial, anti-diabetic, anti-psoriatic, digestive aid, bone growth stimulant, a tumor cell inhibitor, and the list goes on and on. Can you think of anything in prescription form that can do all that? All of this goodness comes from an organic plant in the form of raw juicing, oil, or dried plant material that has not been heated.

Medical cannabis is now legal in 20 of our 50 states because patients and doctors are seeing the healing benefits for themselves. Medical cannabis is a “game changer” for so many illnesses and is giving adults and children a chance at life without being overly medicated.

Dr. Sanjay Gupta recently aired an hourlong documentary entitled "Weed" on CNN where he presented many medical cannabis success stories, research and his support of medical cannabis. He publicly apologized for being misinformed and thus misleading the public to believe medical cannabis was harmful, and he is now fully behind the legalization of medical cannabis.

The child in this documentary is a six-year-old girl named Charlotte Figi. Charlotte has Dravet Syndrome just like my daughter, Jordan. Charlotte was losing the fight to Dravet Syndrome in spite of all the anti-epileptic medications she was on, and doctors offered her parents no hope and no direction for her future. It was then that her mother, Paige, found information about medical cannabis treatment and was led to a non-profit organization called the Realm of Caring in Colorado Springs.

Charlotte went seven days seizure free after her first dose of medical cannabis! Simply amazing considering that she suffered from 300 seizures each week. Charlotte has her life back; she can eat, she can walk again and talk, ride her bike and is able to learn again all because of medical cannabis. Her story is that of a huge leap of faith and a mother following her heart to save her precious daughter’s life. Now it is my turn!

We have wrestled with Dravet Syndrome for 18 years, and to be quite honest, Jordan was in such a downward spiral last month, I wasn’t sure we would get her back, but we did, and God has opened the doors for Jordan and I to go to Colorado Springs and work with the Realm of Caring and families like the Figis using medical cannabis to stop the seizures and give Jordan her life back. It is a huge decision, a very personal decision, and when something is right, you just know it.

Each day I’m in contact with families across the United States, putting their very sick child first, leaving family and friends behind, quitting jobs to go across the country to finally get the medical treatment their child deserves. It’s an emotional roller coaster of a decision.

Medical cannabis is not currently legal in Ohio, so Jordan and I will live in Colorado and not be able to return home until laws change. Medical cannabis is also illegal to transport across state borders at this time. The time has come for laws to change, and Ohio’s time is now. Families are being split, jobs are being left and Ohio is losing revenue from each family like ours who have to move because the oil of the cannabis plant is medically illegal to use in our state. My heart breaks for what these laws are doing to my family, but I know now is the time to go and save Jordan’s life.

You can help bring Jordan and me back to the only place she has known her entire life, Bay Village, by supporting the cause to get medical cannabis legalization on the Ohio ballot in 2014. To be on the November 2014 ballot, 385,000 signatures of registered voters must be collected on state forms by county.

Go to ohiopatientsnetwork.org and click on “link to official petition with instruction page” and start collecting signatures and informing people about why this is the right thing to do. And when November 2014 rolls around, be sure to vote YES to endorse the legalization of medical cannabis in Ohio and encourage your family and friends to do the same. Also, please visit realmofcaringfoundation.org to learn more about the healing that is happening with medical cannabis for many different illnesses.

So long for now, Bay Village! We have loved living along the beautiful shores of Lake Erie. You have brought so many fantastic people into our lives who have made all the difference and brought our awesome church family at Bay Presbyterian Church to us as well, and we are forever grateful. This is not goodbye! Work hard while we are away and make the changes necessary to keep families together.

I’ll update you periodically from Colorado, and if I can be of any assistance or answer any questions, feel free to email me at pal601@aol.com. Above all please keep us, especially Jordan, in your prayers as we go! Thank you so much. God bless!