By Sarah Rowland
Lily's seizures started after her 6 month immunizations. After many doctor appointments and an EEG at 9 months old she was diagnosed with generalized epilepsy. I remember sitting in the epilepsy unit laying in bed with her, her doctor walking in telling us she has generalized epilepsy with every seizure type. He said when he consulted with his colleagues showing them her EEG they said there was no way this little girl is even out of bed walking around doing anything at all by the results of her EEG. We told them she was doing all those things and when they came in to see her they were amazed. Lily is a fighter! She was crawling, walking, smiling, eating solid foods everything children her age did except for the seizures.
We were devastated after the diagnosis not knowing what to expect or what the future would hold for our sweet baby girl. That's where our journey of trying to control her uncontrollable seizures began. We started with one medication to treat her absence seizures, we didn't see relief. Then her seizures started to manifest into myoclonic jerks and they added Depakote to her Lamictal to try to relieve those, but no such luck. So we went to the next medication and slowly went down a huge list of medications which never worked or gave her or her EEG any relief.
We tried the Ketogenic diet and different variations of it which helped a little but still no seizure control. We went to doctor appointment after doctor appointment, epilepsy unit after epilepsy unit, trying to control seizures that kept manifesting and getting bigger, more violent, and more frequent. Lily was tested for everything you could imagine and still no seizure relief. Things just continued to get worse and in 2012 she started having clusters which wouldn't stop.
She was put in the ICU twice; once because it took 7 different emergency seizure meds to stop her status myoclonus. Then shortly after that, we visited the ICU while in San Francisco. The status myoclonus wouldn't stop. We tried everything. We felt helpless and so lost not knowing what would ever stop these seizures and give our daughter any relief. She was seizing well over 200+ times a day. She couldn't walk on her own; she needed a hand at all times. She started wearing a helmet as her seizures were so violent they were picking her up and throwing her to the floor. She bit through her tongue multiple times during seizures and was having injury after injury. We made sure if someone couldn't sit with her that she was in a pack and play to protect her from getting hurt during her seizures.
She was now taking 4 different seizure meds a day, at all times of the day and all day long, which totaled 13 pharmaceutical pills a day just to keep her status seizures at bay and it still wasn't working. She was diagnosed with failure to thrive because she wasn't eating as much with all the seizures that consumed her day. She lost 7 pounds and stopped growing. These seizures were taking our daughter right in front of our eyes.
Then lights started to trigger her seizures. She couldn't be in any light at all or she would go into status. We couldn't even open the curtains in our home or turn a light on. I started cooking in the dark by flashlight; were living in the dark.
I knew there was a better life for Lily and our family than what we were living. I started doing some research to see if there was something else out there that we hadn't tried. I read about cannabis oil and seizures. I took my idea to her neurologist at Mayo Clinic and said I would be going to Colorado with my children to try cannabis for Lily. Having tried 25 different medications and medication cocktails, 2 different diets, and no other medications left to try, there was nothing left. The last option they offered us was a surgery to slice her brain in half to stop the seizures. That was not an option for us.
We started packing for Colorado. During my research I found Jason Cranford and the Flowering H.O.P.E. Foundation and emailed him. He responded right away and said he would love to help our daughter. I can't even explain the amount of relief and gratefulness that poured out of me. I cried tears of joy that we had one more shot! On April 5th we loaded the car, packed up our 4 children, 3 dogs, and drove to Colorado. We got our license and Lily's MMJ card and went to see Jason April 11. He was so wonderful taking Lily in his arms and instantly loving her and seeing the sadness and desperation in my face he gave me comfort. I knew this was where we needed to be.
After two days on Haleigh's Hope I started to see a different Lily. She was following me around the kitchen wide eyed and curious. I turned to her to say hi and she waved, I fell to the floor and cried tears of joy, could this truly be working already??? It was true; each day that passed Lily woke up more and more. She was playing, engaging, signing more, and even had new words. She even rode a bike for the first time on her own. We were meeting our daughter for the first time and it was the most beautiful thing.
In that first week, all of Lily's drop seizures stopped. She no longer had a helmet!!! After 1 month she was already weaned off of 6 pharmaceutical pills per day. She continued to improve and started doing so many things she had never done before. We kept weaning the pharmaceuticals and were able to drop 3 more pills a day. We were never able to wean her from medications in her life. She gained 4 pounds and starting growing like crazy.
In September she ran her first 5k with Mom, Dad, Ava, Lily, and Beau by her side! It was amazing. When we left for Colorado she was diagnosed with failure to thrive and couldn't walk on her own, and now she just ran a 5k. She was so proud of herself. We crossed the finish line and we just held each other. The amount of pride I saw in her eyes and the pride and tears of joy running down my face is a moment I will never forget. She just enrolled in school and is already surpassing goals she had never done before. It's amazing! We are so incredibly grateful for Jason Cranford, Haleigh's Hope and our family at Flowering H.O.P.E. Foundation. We thank God everyday that he brought Jason into our lives and that Lily has her life back. Next Story >