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.