Emelia “Mia” Kate Morley was born on November 6, 2007. It was an uneventful pregnancy, labor and delivery. She looked perfect and beautiful in every way. It wasn’t until about 4 months old that we started seeing some “quirks” and odd behaviors that we had not seen in our older son, Jack. We noticed she seemed to avoid eye contact and did not track objects with her eyes. She wouldn’t reach out for toys that were dangled in front of her. Her muscle tone seemed floppy. We asked our pediatrician for advice and were referred to an early intervention program. He said she had hypotonia (low muscle tone) but with correct therapy should “catch up” over time. Time and time went on. Our little girl never caught up. She subsequently missed every single milestone. We were nearing her first birthday and Mia still was unable to sit on her own, crawl or bear any weight on her legs.
We soon started noticing a strange little flicker or twitch in her eyes like her eyelids were fluttering. We were sent for what would be Mia’s first of many EEGs on her 1st birthday. That’s when we got the devastating news that she was having seizures. The technician running the test said, “I’m not supposed to discuss the results with you since I’m not a doctor but this is very apparent seizure activity”. Her EEG was a complete mess. We were referred to UNC Chapel Hill for treatment, and had high hopes that we would be able to start medication that would stop the seizures so her brain would have a chance to develop and grow like it should and she would once again “catch up”.
This was the start of our nightmare journey with anti-epileptic drugs. The first drug they started her on, Trileptal, immediately made the presentation of her seizures morph from eye flutters to sudden head drops or atonic attacks. We didn’t know when these drops were coming but they were unpredictable, violent, and often. Mia has tried Keppra, Lamictal, Zonegran, Dilantin, Felbatol, Phenobarbital, Topamax, Diamox, Onfi, Depakote, and Klonopin; along with several other supplements, a year of the Ketogenic Diet (which ended with a 2 week PICU stay), and a Vagal Nerve Stimulator (VNS) implant. Nothing worked. She was still having more seizures than we could count in a day and was on enough medication to sedate an elephant it seemed.
We tried a year’s worth of IVIG treatments with no noticeable improvement. Our Neuro at Duke finally started her on ACTH and she soon got some relief, though it was short lived. A typical course of ACTH treatment lasts anywhere from a few weeks to a couple of months with a gradual tapering of the high powered steroid injection. Mia’s seizures immediately increased once we began tapering down. Our Neuro was reluctant to continue because of the high risk of side effects, but it was becoming painfully apparent that there were no other options. His comment was that we would be trading one disease, Epilepsy, for another, Cushing’s syndrome. He then labeled her epilepsy as steroid-dependent and LGS-like.
Mia has been on ACTH injections for almost 3 years now. This is absolutely unheard of. He said he had never heard of another child being so dependent on steroids as Mia. We know that the steroids wreak havoc on her poor little body. She ballooned in weight, putting on 25 lbs. In addition she had high blood pressure, increased blood sugars, excess hair growth, mood swings, and a decreased autoimmune system; along with other risks such as heart failure, cataracts, decreased bone density, and countless others. Knowing that ACTH could not be a permanent solution, and considering we were basically at the end of what current medicine could offer, we knew we had to find something else. But, to be totally honest we were feeling quite defeated at this point. It seemed we were in a life or death uphill battle and we were losing our girl in the process.
We saw a video that had been circulating around on the internet and Facebook about a young man named Zaki who also had intractable epilepsy and a similar story that seemed to parallel Mia’s. I remember seeing a photo of him sitting in a hospital bed so bloated from the steroids and thinking this IS Mia. We read his story and the success he had had with a high CBD strain of medical marijuana called Charlotte’s Web. We were cautiously optimistic, with a huge emphasis on the cautious part. We had been crushed so many times before that it seemed almost a cruel joke to be so hopeful about something and to be let down yet again. We read and researched as much as possible and it seemed we became obsessed with Zaki and Charlotte’s stories of success. We approached our neurologist and were told his hands were tied. There was nothing he could do to help us. It was illegal in our state of NC and he did not have the time, funding or resources to take on an investigational new drug (IND) study. He also told us, “if I was in your situation and had a child like Mia where all other conventional treatments had failed, I WOULD MOVE”.
Fast forward to April 2014, and we have now uprooted our family of 5 (6 counting our mascot, Lola). We had to leave the comfort of our home, family, friends, church, community, career, and all of Mia’s support services to move 1800 miles across the country so we could give Mia a chance. We have seen the little sparkle start to come back in her eyes. She is more alert, focused and interactive. She has made gains in her gross and fine motor development, while also decreasing her pharmaceutical load. She is maintaining the same if not better seizure control. This is amazing considering her ACTH treatment was reduced by half, due to side effects, prior to introducing CBD. We have an appointment in July to meet with her new neurologist here and it is our hope we will be able to take her off of the steroids for good.
We have been welcomed with open arms by our new Colorado “Family”. These parents are in identical situations, fighting for their children and the right to access life changing medication for them. It’s fairly unbelievable that in our country a zip code can determine what options are medically available. It is truly time for our government to open it’s eyes and reschedule cannabis so that more research can be performed.