Malia Moore

Wear your purple today to support Epilepsy Awareness! Around 50 Million people worldwide suffer from Epilepsy.

My first seizure began when I was six months old. They were called infantile spasms, they are a type of seizure that is very debilitating. These spasms lasted for many years. Around the age of 2 I began to have another type of seizure where I would stop breathing and my face would turn completely blue. By the time I was five my parents had been advocating and searching for an alternative route to medications. You see I have practically tried them all but continued to suffer with seizures.

Thanks to the brave little girl Charlotte Figi (rest in peace) and her family we discovered Charlotte’s Web aka CBD oil. At the time, cannabis oil was completely taboo and not allowed in Costa Rica or in Texas but somehow someway my parents found a way for me to try it. 🙂 It was incredible I went 6 months without a seizure. I was so alert and was able to progress in my therapies. I smiled a lot, I felt better than ever. Then I got sick and was hospitalized and the intravenous antibiotic side effect was seizures. On day five of the antibiotics the seizures came back and they never left again.

Over these last 14 years I have experienced pretty much every type of seizure there is such as absent seizures, myoclonic, partial, and tonic clonic seizures. The older I get the stronger and longer they are. My parents yet again advocated and fought for me to try the Vagnus Nerve Stimulator. In 2019, I had the surgery and the placement of the device. It helped reduce my daily seizures from 7 to 9 a day by 50%. Those are pretty good numbers considering how many and how strong those 7 to 9 seizures were a day. I will take anything to have less.

Today I can go a day or two without a seizure but when I have one it is a doozy. Sometimes I can just have a few short jolts and we swipe the magnet across the VNS device and it stops, but other days nothing will stop my seizures except an injection of Valium. Sometimes we have to use more than one bottle to get them to stop and can go on as long as 45 to over an hour before my body stops moving. Right now this happens every 4th or 5th day of the week. It is almost like clockwork. You can count on me having one of these big seizures once a week. When this happens my body stiffens, my eyes roll back in my head and my arms and legs jerk intensely. It is scary sometimes, I have had fellow friends who have passed away in the middle of a seizure. I hear my mom and dad praying every day for them to go away, to find something that will help me at least reduce the intensity of them. I feel for those who love me and have to watch me through a seizure. It is so hard for them and I know how helpless they must feel. I have been on three medications plus the oil for many years. We introduced a different med recently we were for sure that it was going to help but it did not. I am almost done weaning off it and now have another drug I am trying and hope to see some good results from this one.

Today on Epilepsy Awareness, I want to let all those who suffer with Epilepsy around the world know that I understand. I support you. I pray for you and for a cure. Very proud that MaliaMoore.org donated generously to the CURE EPILEPSY foundation this year after my benefit. We can only have hope and faith that one day this devastating brain disorder will have a cure.

Love Malia

We had such a good day celebrating Halloween! Great friends good laughs, and lots of art and creativity! I had a seizure free day which in turn allowed be to enjoy the day and have fun with my friends! So blessed! and so much fun!

Aug 21

Journey to Texas… We left our home at 1pm and after driving straight for four hours we arrived at our hotel in Liberia. We had a great drive down. We got settled in the hotel and the following morning we were up and getting ready for the big day. We  had an uneventful check in everyone at American Airlines is so nice to me. We went through security with no problems, and were at our gate with almost three hours to spare, It takes a lot to get me ready for a big trip like this.  We have to break down my wheelchair carry me on board Mcgyver me in a seat and so on…. I did so good sitting up! Am very proud of myself on how strong I have become with all my  hard work with Cinthya. The flight went well. Mom gave me a tiny dose of Dormicum, to help me hopefully not have any seizures on the plane. In the end I ended up having two very strong seizures but thank GOD they stopped and only lasted a couple of minutes. For the most part I slept the whole way… I am excited to get there and see Granny and Paw Paw. This is going to be a great adventure I just know it and I feel so blessed to be able to make this trip for another time! 

August 19th

I am headed to Texas ! Three years ago we were planning to go to Texas for my benefit and the Lissencephaly Convention but then Covid hit! Finally after things settled down a bit with Covid the Lissencephaly Convention was back on and we decided to give it a go and go see friends and family. The Lissencephaly convention was being held at Morgan’s Wonderland my favorite all inclusive park. Unfortunately about three weeks ago the LISS Convention was cancelled …. We were already booked on flights and had planned to celebrate me and my life for another 14 year benefit… Even though we were so excited to meet other Liss families and hear medical professionals and other families speak about liss we are coming to Texas to see family and friends and still planning a big day for us at Morgan’s Wonderland.