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Tuesday, March 18, 2014

Colorado Here We Come!

After considerable thought, we have decided to move to Denver, Colorado later this year to start June on Charlotte’s Web, a strain of medical marijuana that is showing promising results in children who have failed all the FDA-approved pharmaceuticals available to treat epilepsy. It is unfortunate that we have to move our family all the way to Colorado to get June this much-needed medication, but the state of Missouri legally prohibits us from accessing this medicine so we have no choice.  

I believe strongly that this medication should be legal in every state for the thousands of children like June who are suffering from intractable epilepsy.  Skeptics may argue that we don’t know if this will work, but we didn’t know if the 10 different seizure medications and special diet that June has already tried in her short lifespan would work.  In fact, doctors recommended treating June with a drug that had a 3% chance of working and one of the side effects was death.  Skeptics also say that we should wait for the medication to become FDA approved because laws will change “eventually.” Doctors’ attitudes are already shifting and small FDA trials are underway, but June does not have time to wait for that to happen because her brain is developing now – not “eventually.”  Every day June has seizures delays her development so we cannot wait any longer.

Unfortunately, we cannot just start the medication tomorrow in Colorado because it is not that easy and many procedural steps are required.  Once we move to Denver we still have to get on the waiting list for the medication, so it will still be some time before June is able to try it, but we are hopeful and excited about this next step.

Thanks for all your thoughts and prayers.  I will update you all through the blog as we know more, but we wanted to let everyone know as soon as we made the decision.  So our journey with June continues…on to Colorado.


  1. My prayers are with your family. Good luck and stay strong

  2. Ah Genny and Matt, you are taking big steps to give June every chance. We pray for you all. Love.

  3. prayers for you and your family. My daughter also has epilepsy and we are just now starting her on medication. I too wish that the medicinal marijauna was legal and available everywhere so our children don't have to suffer anymore. You are brave and your daughter is strong. The best of luck.

  4. Hi, I just started reading your blog. I just got back from Children's Hospital and found you through google after looking for something similar to the scary pattern I saw on Henry's EEG monitor. Anyhow, long story short, Henry has refractory epilepsy as well. He's tried 11 medications, is on 4 now, and also on the MAD diet. He is almost 5. He was averaging 50 partial complex/tonic clonics a month. For some miraculous reason the last two weeks we've seen no big ones! Maybe after 9 weeks the diet is finally working? IDK, but this EEG was to look for the smaller ones (subclinical). I'm not a dr, but it didn't look right to me. It sounds like you are doing everything in your power for your beautiful little girl and it also sounds like you have had some major ups and downs. I can relate. We also hope to try Charlottes Web. We are on the list but haven't talked about moving there yet. It's the next step. The last resort, and the thing that broke my heart, was when the dr suggested trying Felbatol. I think you may have been given the same suggestion. I hoped we would never get to that point. Maybe this streak we have going will last, who knows. Like you already know, epilepsy is a crazy unpredictable beast. You are in my thoughts and prayers and I wish you all the best in Colorado. I will check back for updates!